Health Info

The quotation towards the end of the following article grabed me, "We need to
discard the notion that vitamin D affects a disease
state in a simple way." But because everybody desires simple answers, this is
what is sold by some. Others, for whom simplicity is an uncomortable place,
peddle discord. Examples include Vitamin C, Vitamin E; first they cure, then
they don't, then they're harmful in some previously unaccountable manner.
Yadda, Yadda, Yadda. Its not science, its a sitcom, and a bad one at that.
And the journal headline reference below...."Vitamin D discovery outpaces FDA
decision making," not exactly a man-bites-dog headline is it?
Jeff
"The reason why some people get lost in their thoughts is that it can be such
unfamiliar territory for them."
Vitamin D Deficiency Study Raises New Questions About Disease And Supplements
Science News Daily (Jan. 27, 2008)
Low blood levels of vitamin D have long been associated with disease,
and the assumption has been that vitamin D supplements may protect
against disease. However, this new research demonstrates that ingested
vitamin D is immunosuppressive and that low blood levels of vitamin D
may be actually a result of the disease process. Supplementation may
make the disease worse.
In a new report Trevor Marshall, Ph.D., professor at Australias
Murdoch University School of Biological Medicine and Biotechnology,
explains how increased vitamin D intake affects much more than just
nutrition or bone health. The paper explains how the Vitamin D Nuclear
Receptor (VDR) acts in the repression or transcription of hundreds of
genes, including genes associated with diseases ranging from cancers to
multiple sclerosis.
"The VDR is at the heart of innate immunity, being responsible for
expression of most of the antimicrobial peptides, which are the bodys
ultimate response to infection," Marshall said.
"Molecular biology is now forcing us to re-think the idea that a low
measured value of vitamin D means we simply must add more to our diet.
Supplemental vitamin D has been used for decades, and yet the epidemics
of chronic disease, such as heart disease and obesity, are just getting
worse."
"Our disease model has shown us why low levels of vitamin D are
observed in association with major and chronic illness," Marshall
added. "Vitamin D is a secosteroid hormone, and the body regulates the
production of all it needs. In fact, the use of supplements can be
harmful, because they suppress the immune system so that the body
cannot fight disease and infection effectively."
Marshall's research has demonstrated how ingested vitamin D can
actually block VDR activation, the opposite effect to that of Sunshine.
Instead of a positive effect on gene expression, Marshall reported that
his own work, as well as the work of others, shows that quite nominal
doses of ingested vitamin D can suppress the proper operation of the
immune system. It is a different metabolite, a secosteroid hormone
called 1,25-dihydroxyvitamin D, which activates the VDR to regulate the
expression of the genes. Under conditions that exist in infection or
inflammation, the body automatically regulates its production of all
the vitamin D metabolites, including 25-hydroxyvitamin D, the
metabolite which is usually measured to indicate vitamin D status.
Vitamin D deficiency, long interpreted as a cause of disease, is
more likely the result of the disease process, and increasing intake of
vitamin D often makes the disease worse. "Dysregulation of vitamin D
has been observed in many chronic diseases, including many thought to
be autoimmune," said J.C. Waterhouse, Ph.D., lead author of a book
chapter on vitamin D and chronic disease.
"We have found that vitamin D supplementation, even at levels many
consider desirable, interferes with recovery in these patients."
"We need to discard the notion that vitamin D affects a disease
state in a simple way," Marshall said. "Vitamin D affects the
expression of over 1,000 genes, so we should not expect a simplistic
cause and effect between vitamin D supplementation and disease. The
comprehensive studies are just not showing that supplementary vitamin D
makes people healthier."
Journal reference: Marshall TG. Vitamin D discovery outpaces FDA
decision making. Bioessays. 2008 Jan 15;30(2):173-182 [Epub ahead of
print] Online ISSN: 1521-1878 Print ISSN: 0265-9247 PMID: 18200565
Adapted from materials provided by Autoimmunity Research Foundation, via
AlphaGalileo.

Dr Mirkin himself wouldnt take MY insurance, but takes some others. one reason i
was directed to Dr Menon is that she DOES take my insurance. BUT then their
in-house lab would NOT take my insurance, so i get an order and drive home and
get the lab work done locally. you would have to call and tell them who is your
ins carrier and they can tell you if they take it. I know myself, for some
reason, alot of places in MD wont take my insurance. (untied health care) Kathy

I go to Dr Mirkins office and apparently it is quite large and busy. I never
even heard of Dr nathan! I go there and see Dr Menon, also there is a Dr Wong.
(all women) I am happy with Dr Menon so far. they all have to check in with Dr
Mirkin if they have any questions about the AP, but Dr Menon seems very
knowledgable herself . I dont know the others there, there may be even more Drs
there I dont know about. Kathy in WV

Just wanted to say that I have also had this problem - not at a
specific time, just at night whenever I was getting ready for bed.
I've been taking Zithromax for 3 months because I couldn't tolerate
the Mino anymore, and I'm starting to do a lot better. Swelling is
mostly gone, chills gone, and pain almost gone. I never post, but
I've been a part of this group for 8 years, and it has saved my
life. Thanks to all of you who share your experiences.
Heather

hahaha ! I like your analogies Ken. Thanks for the laugh. We'll just call you
Mungo from now on.
I'm pretty much the same as you, experiencing the worst pains early in the
morning and also feeling very cold. I'm like C3PO after he hasn't been oiled
for 10 years. I always fall onto the toilet seat with a thud... I once fell
onto it and a chunk of it cracked off - must get that fixed. At least you can
stand up ;)
I also get the shivers ...at night and any time of the day or in any season,
even if it's hot outside.
Have you tried different things with your bed eg. raising your legs up, or a hot
water bottle ? I do this and it helps. I get a big doona or pile of pillows
and put my legs over them so the joints are kind of like in more of a sitting
position. The hot water bottle keeps the circulation going longer so the joints
don't get a chance to stiffen up so easily. I also have a magnetic knee wrap
which keeps the knee warm. Sorry if these suggestions sound trite... I hate to
sound like one of those annoying people who, after mentioning you have
arthritis, tell you to take celery seeds or something.
all the best,
Leonie

The Circadian Rhythm of Rheumatoid Arthritis
It seems with most of us, RAers, that the pain and joint stiff are at
their height between 2 and 4 am. In this recent flair, I , like the
protagonist in "The Amityville Horror", wake up at 2 am every night
with severe pain and stiffness in most joints. I usually, with great
difficulty, hobble to the toilet, like an extra from "The Robe" and by
the time I get back into my bunk, I am shivering and shaking and
freezing, like the African explorer, Mungo Park, in the swamps of the
Gambia.
My Question is: Does anything else suffer this nightly terror of
shivering and feeling very cold when in a flair? Please let me know.
Ken.

Hi Lynne,
I've been gluten and dairy free for about 4 months, and today ate those
things! I don't plan on doing it again, but now I'm concerned that I just ruined
everything! I can't find information anywhere about whether or not this is a
major setback. I don't know enough about the immunology of it. Is eating those
things again before the original damage is healed like starting again at the
beginning? Thanks,
Emma
**************
Biggest Grammy Award surprises of all time on AOL Music.
(http://music.aol.com/grammys/pictures/never-won-a-grammy?NCID=aolcmp00300000002\
548)

Hi Group,
With so much talk about Bioidentical Hormone Replacement, I want to make
you aware of a very useful book by Uzzi Reiss, MD called Natural Hormone
Balance for Women
(Pocket Books, NY 2001). It is the perfect, reliable information on the
subject. Dr. Reiss, a California GYN has decades of practical
experience and proven results..
Most of all, he points out that every women has different requirements
for the various hormones. The appropriate amount can be found from the
symptoms. There is no
one quantity fits all.
For instance, on estrogen he shows that a deficiency brings Night
Sweats, Anxiety, Depression, Fatigue and Weight Gain. Excess estrogen
brings breast tenderness and water retention.
So every women can adjust the dose for her requirement.
The same for progesterone, testosterone and DHEA.
Furthermore, the best application is either transdermal or sublingual
because it bypasses the stomach and liver.
In addition, the dose can easily adjusted to any value.
Every women over 30 should have this book. It helped my wife
tremendously.She gave it to her gynocologist who was most interested and
appreciative ! Most of all, your are not limited
to your own doctor who may and may not be up-to-date or brainwashed by
big pharma.
Good Luck,
Robert

Hi All -
One more question - Does anyone know of this dr in the DC area, recommended
on Roadback.org -
Philip W. Kempf, M.D. (rheumatologist, IV & oral) Ask for antibiotic therapy
Arthritis Clinic of N.VA
1635 N. George Mason â Suite 220
Arlington, VA 22205
P: 703-525-3069
F: 703-525-3850
He's a lot closer to me than Dr. Mirkin's clinic, but I haven't heard any
recommendations for him on this site. Any info out there?????
Txs so much!
Jan

Recently, I shared my wonderful experiences about the sampler program being
offered at http://savingsystems.org I must ask that people stop emailing me
and thanking me for the tip. My mailbox is constantly overflowing. I am
receiving
a couple of hundred emails per day from people that joined the program and
are now saving huge amounts of cash. many others are sending me their register
receipts as attachments showing their savings. I know how much you can save
because I am part of this program. You are all very welcome there is no need
to email me and thank me. I am very happy to have been able to help and I hope
all of you will take time to share great tips with the rest of us!
Emily

**************Biggest Grammy Award surprises of all time on AOL Music.
(http://music.aol.com/grammys/pictures/never-won-a-grammy?NCID=aolcmp00300000002\
5
48)

Hi -
I just made my first appointment to check out AP for lupus - I live in the DC
metro area and called Dr. Mirkin, who is not taking many new patients. They
told me Dr. Nathan is taking many of his patients now, so I made an
appointment with her so that I can get in in February instead of waiting until
April to
see Dr. Mirkin. Does anyone have info on Dr. Nathan? There is another female
dr. in the clinic, whose name I don't know. If someone knows of her and
recommends her, I could call and change the appt.
Txs for any help you can give me with this BIG step!
Jan

I lived 41 years in Boston and southern New Hampshire (N.H.) I moved to North
Carolina (N.C.) which is in the South. This makes me a Damn Yankee although at
home I am not a Yankee (WASP) but Irish-Catholic and therefore ethnic. A Damn
Yankee is someone from the North who comes to the South, and stays LOL.
I have tried to make friends down here and I cannot. Two of my friends at home
have passed away and I have two left, at home. The people who are friendly are
from north of the Mason-Dixon Line.
I don't get it, I certainly have reached out repeatedly. I think there are
probably many of us who are lonely, and who feel alone, too. Being an only
child I am able to keep myself busy; in fact, there are not enough hours in the
day. My husband says I talk too much, no doubt true as he is it. I sure miss
having a few women friends to chat with on a variety of subjects. I wish I
could afford telephone service to make calls through out the country and speak
with people from my lists :-)
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

Does anyone experience side-effects from Vitamin D supplements?
Thanks,
Linda

A bit of an uplifter

My wife has had lupus for 14 years and due to viox, and a variety of
drugs including prednisone etc. she cracked a bone in her hip. it would
not heal, even though the surgeon stated that she had bones like a 20
year old male. it turned out, the vioxx caused it to crack in ther
first place and never allowed it to heal. she then had an artificial
hip put in, later, from a minor surgery got a severe infection, almost
died, was on antibiotic therapy through an iv all summer long.
at the end of this ordeal we were shocked, because her lupus had gone
into remmission. I have talked one Physician into putting her on 100
mg of minocyclin but he moved away.
we need to find a competent physician in the western United States who
would be willing to treat her with antibiotic therapy. we live in
Wyoming but would be willing to travel anywhere.

Hi all
When I was younger, lonely, shy and introverted, low self-esteem etc.
I once went to a coffee shop on my own, saw a lot of people I knew
but wasn't friends with, and felt even worse. Then I thought "What
the heck" and I just walked up to one small group of people I liked
but didn't really know, sat down and said hello. They said hello
back, I stayed there (feeling uncomfortable) and gradually became
part of the conversation. Afterwards I thought "So that's how you do
it!" and have tried to do this in my life ever since then, often not
successfully (then the old uncomfortable feelings surface again but I
tell them to go away). Don't let feelings of "they wont want to talk
to me" get in the way.
The other thing is, never never ever tell people that you're lonely
(unless they're good friends whom you've known for a long time or
therapists or something) . It makes most of them run the other way, I
think because they feel that you're wanting them to fill the void and
most people don't like feeling under pressure or guilt-ridden when
they can't live up to expectations. Dolores' advice was great about
contacting groups, doing things for other people etc. I have found
it really important to find people with a common interest. Otherwise
there's nothing to base a conversation around. Board games are a
great way of being with people in a relaxed atmosphere. Some of those
people could become good friends over the months.
And also, do the self-help thing! Read self-help books and put the
ideas into practice. Practise your spiritual path and use a gratitude
journal every day, repeat affirmations every day (it took 6 months
for them to start working for me), and smile smile smile even when
it's pretend. Be the one who (at first) always does the ringing up
and arranging coffee dates. And then do it the next time. And the
next. Don't wait for others to contact you. It's a sure way to
continue being isolated. One day those people will start ringing you
too and then you'll know it's a proper friendship.
I had no friends 20 years ago. Now my life is full with about 6 good
friends and many acquaintances. Six friends are almost too many to
have to ring at least once a week and arrange outings with. I'm on my
own now with no partner and children far away. My other single
friends and I do talk to each other about the loneliness of the human
condition. It seems to be just the way it is with everyone. So we
treasure and nurture our friendships. It takes a lot of energy but
it's worth it.
And keep thinking positive even when things look bleak. Thoughts are
things. They can be changed with practice.
Love to all of you courageous and inspiring people on this list. My
lifesavers!
Ros

HOW TO FIND A PHYSICIAN TO PRESCRIBE NHRT
QUESTIONS TO ASK
* What are your beliefs surrounding treatment of Menopause and
Perimenopause?
* What are your views on HRT since the Women's Health Initiative?
* How are you treating women on hormone supplementation since the
study was halted?
* Are you still using HRT? Prescribing lower doses for less duration?
Using natural alternatives?
* Do you support a women's choice to test bioidentical hormone levels
in saliva or do you only test total hormone levels with a conventional blood
test?
* Do you support a women's choice to use bioidentical hormone sources
instead of HRT?
* Are you trained in the use, efficacy and dosing of bioidentical
hormones to meet individual need.
* Have you prescribed natural progesterone? What have been the
results?
* Do you ever work/consult with a compounding pharmacist regarding
physiological dosing of HRT?
* Do you integrate complementary treatments into the course of
treatment for symptoms of menopause?
* Do you regularly monitor hormone levels in your patients who are
supplementing?
* Do you adjust supplement dosage as needed according to tested
hormone levels and symptoms?
* Can I call you if I need to?
* Are you interested in learning more about natural menopause
management?
* Do you keep up with scientific literature on the subject?
KEEP A JOURNAL OF SYMPTOMS, REACTIONS TO TREATMENTS, AND CURRENT THERAPIES,
ETC.
To find a physician who will prescribe bioidentical hormone therapy, call or
write:
American Association of ACAM (American College for
American Academy of
Naturopathic Physicians the Advancement of Medicine)
Anti-Aging Medicine
703-610-9037 1-800-532-3688
1341 W. Fullerton, Suite 111
<http://www.naturopathic.org/
<http://www.acam.org/
IL 60614
773-528-4333
Natural Woman's Institute IACP (International Academy
<http://www.worldhealth.net/

Here is an email from my boi identical doc. Hope this helps all of you who
want to go on bio identical hormones (men too). One other thing .if you have
a gyne who is open to them (you don't need to make an app, just call and ask
on the phone) they can call my compounding pharmacist and she will talk to
them on the phone about then. I have been in her office many times when she
was talking to docs. She also sends the hormones to you fedex and even in
ice if necessary. I have her send my kids supplements for the grandbabies
that are compounded into creams. I am not selling her.you can go to someone
else but she is very good.
Cooky
_____
From: David Goldstein [mailto:davidg25@...]
Sent: Tuesday, January 22, 2008 12:03 PM
To: C Stonkey
Subject: Re: bio identical
Have them try acam.org or holisticmedicine.org These websites
have directories of holistic physicians who would be more likely to
prescribe bio-identical hormones.
Dr. G
On Jan 22, 2008, at 10:59 AM, C Stonkey wrote:
Hi Doc,
Do you know where I can find a list of doctors willing or do prescribe bio
identical hormones in other states? The women on the rheumatic site are
asking.
Cooky
=

To be honest, the whole supplement thing is starting to irritate the hell out of
me. I am probably the worst supplement junkie around, but as I've found, they
are no cure for RA or any other disease and only fool you into thinking you are
curing yourself and don't need help ... sure supplements are great and help with
symptoms, and can make life bearable, but someone out there is making a lot of
money off sick people (usually MLM people). I would love to throw all my
supplements out and find something simpler - I hope the AP therapy works for me
and I can give some of them up since they are causing me to go broke. I would
have started the AP therapy ages ago if it weren't for the false promise of
supplements to cure everything under the sun, and not to mention the silly
elimination diet that Chandu talks about. Sure it might have worked for
her/him, but it just put me off track about 3 years ago when I was on this list
and looking for answers - I could have been getting onto AP much sooner and
being fixed up properly instead of going off on wacky tangents.
Thanks for listening :)
Leonie

Hello-
I have had RA since 1988, when it hit me at age 20. I have a severe
case: probably need a hip replacement now, curled hands, etc. etc. I
started the AP in 2000 or 2001, then stopped it within the year for
personal (non-medical) reasons. I'm ready to begin again and want
some opinions regarding doctor selection.
I live in a small SE Kansas town with limited doctor choices. My
local doctor will not prescribe AP, nor will two rheumatologists I
have approached (no surprise). I think an M.D. in a nearby town who
is known to take a more wholistic approach to medicine would prescribe
the AP.
I'm wondering, though: Because I have severe, long-standing RA, would
I be better off making a trip to see Dr. Franco in California? That
would be a convenient choice, because he does all of the testing so I
wouldn't have to find a lab, find someone to send off a blood sample,
and other logistical considerations.
What are your opinions? Would I benefit from seeing Dr. Franco? Or
should I continue looking locally?
I know the choice is ultimately mine. I am not looking for anyone to
make my decisions for me. I'm simply asking for your experiences and
opinions so I can use that information to make an informed decision.
Thanks for your time!
Angela

Hi Angela,
How are you doing?
Just curious, would you be ope3n to alternative solution? Have you tried
natural supplements? The reason I'm asking is because I have a
cousin who has RA and I asked her to try these 2 strong antioxidants
called OPC-3 and ORAC from Isotonix line. She was a bit hesitate in the
beginning, but she tried it anyway because it's all natural. She
took it the first time on April 2007. She went to doctor in May 2007 and
her C-reactive protein went down from 86 to 68. In August, she went back
to the doctor again and this time her C-reactive protein value went down
drastically to 4.4. Her doctor was surprised. My cousin looks so much
healthier now, less pain, getting better everyday. Not totally cured
yet, but she has a lot of energy now and looks so much healthier. Plus
it's all natural, so no side effect.
Those products were recommended by my friend who is a Nutraceutical
Consultant. I got those products from his website:
www.marketamerica.com/zingo <http://www.marketamerica.com/zingo
Ok, good luck!

I got this email from my compounding pharmacist today. To all of you on bio
identical hormones and those who may need hormones in the future (this
includes men). Please read this and respond. I cannot imagine life without
my hormones....how about you?

Just caught my eye today in the Washington Post Magazine today. It's
about a 'fiber disease' and some are using AP therapy with helpful
results. This diseases seems to hit those who have been gardening.
They all seem to have lesions and itching with fibers coming out of
their skins. It sounds like there's a LOT of sick people with this
disease too.
http://www.washingtonpost.com/wp-dyn/content/article/2008/01/16/AR2008011603134.\
html?hpid=moreheadlines
excerpts:
Thousands of people around the world say they have a disease that causes
mysterious fibers to sprout painfully through the skin, and they've
given it a name. The spread of 'Morgellons disease' could be Internet
hysteria, or it could be an emerging illness demanding our attention.<SNIP
The catalogue of symptoms for Morgellons includes crawling, biting and
stinging sensations, granules, itching, threads or black speck-like
materials on or beneath the skin, skin lesions, fatigue, joint pain and
the presence of blue, red, green, clear or white fibers. Other symptoms
supposedly include what some sufferers politely refer to as
"neurological effects," such as mental confusion, short-term memory loss
-- and hallucinations such as, possibly, Sue's descriptions of the pink
worm and springtail fly. <SNIP
Whatever it is -- and most doctors believe it's purely delusional --
Morgellons has become a grass-roots Web phenomenon. Google it, and
nearly 162,000 references show up, many of them chock-full of vivid
color photographs of what people claim are strange, colorful fibers
growing under their skin. Several other sufferers have taken graphic
videos of themselves poking with tweezers at what appear to be
fiber-entangled lesions and then posted them on YouTube. <SNIP
Her dermatologist had told her to contact NIH. Sue says a researcher
there gave her information on Morgellons Web sites. She went to the MRF
Web site and found that she was experiencing every symptom listed --
fibers, crawling sensations on the skin, brain fog, chronic fatigue,
joint pain and more. <SNIP
She says she finally found some relief when she went to see James
Matthews, a Gaithersburg family doctor. Matthews, who says he himself
has Morgellons and offhandedly mentions aliens and conspiracy theories,
puts his patients on a strict, experimental regimen of high-dose
antibiotics, antiparasitic medication and antifungal cream that can run
as much as $1,000 total.<SNIP

Hi Gwen & others who've used methotrexate
I have a friend (who doesn't have a computer) who's been on MTX and prednisone
for about 4
years - MTX 25mg weekly and pred 5mg a day. She's pretty ill all the time with
shingles and
viruses etc and is interested in the AP but is too afraid to go off the MTX
because of the pain.
She's supporting her disabled daughter and grandson so can't be disabled
physically herself.
It sounded from your story that you started AP while still taking MTX and it
worked so you
could go off it. Could you tell me how you did that so I can make suggestions to
my friend.
I've also read that it's not possible for the antibiotics to work while still on
MTX but that
doesn't seem to be true in your case.
I hope someone can help with suggestions.
Thanks a lot
Ros (AP 18 mths)

Hi I had asked before but got no answers, so im trying again.
is there any link of RA/ mycoplasma and eczema? Thanks Kathy
anyone else have late onset eczema and mycoplasma?

Perhaps you can explain to people, especially those who say they have "aches"
sometimes, that RA is a totally different disease. In RA the life span is
frequently shortened, it can be disabling, and the disordered immune system
leaves one open to serious conditions. Whereas, OA is usually defined as "wear
and tear". Worlds apart.
Denise
www.bestdogcookies.com

The lesson I've learned the hard way is when people don't listen,
don't believe, don't support me with this illness, our relationship
is jeopardized. Scleroderma is not just testing me, it's testing my
family & friends, and only a handful are passing the test.
I recently was telling a long-term friend how expensive Minocin and
my supplements are. He replied that I should take the generic,
there's no difference. He quickly refuted me with 'science' when I
tried to explain, ending it with a shameful "Well, it's your
choice". Later in the conversation I was telling him how I've felt
so lost since I became sick. He said I should just 'laugh it off',
and that I'm starting to sound like his grandmother. I felt totally
unheard, and said I had to get off the phone to work on finding
cheaper ways to get meds. He replied that if he were me, he would
just give up & die because that's his life philosophy, to let nature
take its course.
I never would have guessed how insensitive people can be until my
dx. A true friend with good communication skills would have asked
me more questions, let me talk it out and let me know that he really
hears me. Would have offered on-point support, helped me brainstorm
solutions, just been on my side. If he was uncomfortable with
my 'negative' feelings, they would have passed naturally had he
taken a helpful role, instead of throwing out his surface level
advice.
Since my dx I've lost so many relationships over insensitivities.
Our entire culture seems to be needing lessons in empathy and
communication & especially listening skills.
Since everyone in these forums is in the same boat, that's the one
thing I feel we can count on one another for, shared understanding.
These forums keep me functioning emotionally. These forums are an
essential component to my physical and emotional health.
I don't post often, but I read every post, and every post makes me
more knowledgable, and stronger. I feel somehow bonded with you all
in this magical electronic world. What the heck did people like us
do before this electronic medium?

Hi -
I am looking into A/P for the treatment of my SLE because I reacted
negatively to Plaquenil, the drug of choice for SLE flare prevention. I was
horrified
that I couldn't tolerate Plaquenil until I began reading about A/P. Now I'm
thinking that might have been a blessing in disguise.
I've been off the Plaquenil for 3 wks now and am wondering if I am still
experiencing some of the side effects from it. Could this be possible? How
long
does it take this drug to get out of one's system?
I was diagnosed with SLE a year and a half ago. No outward symptoms showed
up until Fall 07 and then I had a very bad flare, with every joint inflamed
horribly, fatigue (in bed almost 24/7 during the worst part), and blood level
drops (I'm still slightly anemic since then, but everything else has returned to
normal levels). Thankfully, no organ involvement!
I began taking Prednisone when the flare got so severe that I felt I had no
choice (20 mg) and then took Plaquenil for a month (during Dec 07). A couple
of weeks after starting the Plaquenil, I developed the following symptoms:
-red, puffy eyes
-a slight loss of visiual acuity (I was thinking of buying a slightly
stronger pair of reading glasses at the drugstore)
-after 3-4 wks, the muscles in my face felt almost paralyzed (well, not quite
paralyzed, but like they weren't moving as my brain was telling them to - I
wondered if I was developing Bell's Palsey)
-a puffiness developed above my eyes (between my eye sockets and my eyebrows)
- It's not noticeable to others, but I feel it every time I attempt to open
my eyes all the way - ie every time I blink - and it is a weird feeling - like
I'm too tired to open my eyes all the way, very distracting, and I'm concerned
about what this is)
-MUCH anxiety - It felt like drug-induced anxiety. I was fine before
starting the Plaquenil.
I went off the Plaquenil (after talking to my doctor, who said it would be ok
to discontinue the 400 mg a day, though he wasn't convinced the Plaquenil was
causing the problems). I went off it and the muscle thing is MUCH better.
Also, the anxiety is better. However, the puffiness above my eyes is still here
as much as it was when I was on the Plaquenil.
I have been off the Plaquenil for 3 weeks now. Would it still be affecting
me? I'm hoping so and that maybe the muscle thing, the anxiety, and the
puffiness will all be gone soon. I know the anxiety could be partly due to
Prednisone,
though I was just fine on the Prednisone for almost 2 months (even 20 mg)
before I started the Plaquenil.
Thank you so much for your time and feedback -
Jan

I am new to this group and next week Monday I am going to a doctor that will
treat me with antibiotics.
I became sick in 2005 with pneumonia, one pulmonary doctor gave me a five year
pneumonia shot and from then on it was downhill all the way and when they
couldn't get me well I had to have a lung biopsy done. I found out that I had
interstitial pulmonary fibrosis cause by the dermatomyositis.
The first year they treated my with cytoxen (chemo) and lots of prednisone. I
did okay, than my new pulmonary put me on antibiotics and I started to feel
better. My rhummy send me to Denver to see a specialist and he put me on
Cellcept (anti-rejection drug) in February. Well by the end of this year I had
more problems then I wished for. Such as: hemorrhage in my eyes, sores on my
hands and feet and being tired all the time. Then I started to get so weak that
after every 15 minutes doing something around the house, I had to sit down.
Please pray for me that I found the right doctor, I heard she has done this
for 15 years already. I don't mind driving 191 miles to her office and my
daughter has to go too, she has osteoarthritis and inflammatory arthritis. (Ha
ha, what a pair)
thank you for listening to me.
Eva

Has anyone run into the problem of getting rid of the mycoplasm
infection only to re-contract it from a friend? When I started
antibiotics for Lyme I noticed my "asthma" disappeared after two months
of Zithromax much to the frustration of my allergist I might add.
Well I made a new friend with a nasty chronic cough who refuses to go
to the doctor, claims that its asthma and sucks on Primatene Mist
inhalers probably 30 times a day. A few weeks of hanging out with the
new friend and the terrible "asthma" symptoms started reappearing. I
ended up with horrible gagging cough though X-ray and breath testing
showed nothing wrong with my lungs. I pushed two of my doctors until I
finally got put on Zithromax again for several weeks and the coughing
went away. I have had to since disown this friend because she refuses
to go to the doctor and I cannot risk my own health being around her.
Angela

Hi Mike,
I'm curious have you ever tried long term Diflucan as treatment?
Besides having the Crest I am also battling Lyme disease so I am on
a treatment referred to as the Schardt protocol. In a nutshell it
consists of taking 200mg Diflucan daily for 50 days then taking high
dose antibiotic for 50 days then starting the cycle over again. I
usually take Minocin during the antibiotic phase. I've noticed when
I am in the Diflucan phase I feel very strong and I notice the skin
symptoms of the Crest/Sclerderma dwindle away. So I would like to
know if anyone else has experienced this with Diflucan?
Oh and by the way the reason for taking Diflucan for Lyme is because
the medicine will block a specific liver pathway that the Lyme
spirochetes use to travel. By blocking the pathway you interfere
with the spirochete's lifecycle and cause them to die. Yes you must
be careful what other medications you use at same time because they
can't use the same liver pathway as the one you're trying to block
or it can cause problems. Its a brilliant protocol developed by a
German doctor who contracted Lyme.
Angela

My doctor wanted to have my insurance pay for the
test. I have to say the lab technicians were confused
with the order, but in the end my Mycoplasma results
came back high.
the Mycoplasma IgG AB (eia) was greater than 1.10
(actual result was 2.28).
The lab could not perform all of the mycoplasma tests
the doctor wanted to do, but of those at least one
came back positive and explained why I have been so
sick for so long.
San

Hi all,
I started taking Withania, also known as Ashwaganda. It really helps with pain
and also lessens anxiety considerably which helps control RA.
I used to get all sorts of referred pains up and down my legs and arms, but now
the pain is more localised in the joint. Don't know if that's good or not, but
it makes life a lot easier.
Does anyone else take this stuff too ?
~Leonie

hi Mike... by the way, what do you say when people ask "what is Scleroderma" ?
having people not know what it is must be frustrating .
I find people also don't know what RA is and how it affects a person. I wish
someone would give it another name, since when most people think arthritis, and
they think old people with a few stiff joints etc. as you know, what we've got
is so much more, yet some people judge us lazy or hypochondriacs.
best of luck with your new book... it will help a great deal of people.
all the best,
Leonie

Hi all,
Gwen has sent us her story which I've just put on our website at
rheumatic.org. Thankyou very much Gwen and I'm very glad to hear how
much better your life is now.
Chris.

Hello. Can anyone recommend a reliable lab service to obtain a test
for Mycoplasma Antigen PRC?
I do know about the TARCI test in Gaithersburg, MD. I believe there
are also other labs, but I don't know names, or have any reputation
information for them.
Please forgive any dumb questions. I've read books, done some
research, understand some basics, but I'm still very ignorant about so
much.
Amy

PS....Cass, the American College of Gastroenterology gives a good explanation
of Sphincter of Oddi disfunction that occurs after GB removal. Just scroll
down to the sub-heading:
SPHINCTER OF ODDI DYSFUNCTION (BILIARY DYSKINESIA: POST-CHOLECYSTECTOMY
SYNDROME)
http://69.20.67.254/patients/gihealth/biliary.asp
Peace, Maz

Be careful with the Cipro. My dr put me on it for a couple months and
it caused me tendon rupture. Its a little known fact that Cipro can
cause tendon rupture and tendonitis because it normally happens with
the more powerful antibiotics such as Levaquin. Just a word to the
wise to be careful with the stuff.
Angela

Hi Cass....the brain cells just kicked in and realized you were the person
who posted on RBF about this a while back!!! LOL I was confused as posted on
RBF as "San", but here you've posted as "Cass"? Sorry to hear you're still
having these digestive issues, as this has been going on for a while for you.
Did
you ever look into the sphincter of oddi question?
Peace, Maz

Hi, I am doing AP for RA (mycoplamsa infection actually) but I also just had a
second outbreak of eczema in 2 yrs (never had it before that) 2 yrs ago they
told me eczema was autoimmune also. Does anyone know a connection between eczema
and RA or mycoplamsa? since Ive been on AP 4 months now and happy with the
results for the joint pain. I was surprized to have the eczema show up again,
and more wide spread this time also. but it seems to be clearing up now. may be
a relation to poison ivy... had some PI on my wrist and then the eczema broke
out all over my body. PI is gone now and the eczema seems to be under control.
Kathy

I think cookie took some offense to my post, and I do
not mean to dis this protocol. I know I would never
take some of the meds my rheum. wanted me to take for
pa, but I think cookie is not understanding the extent
of my problems right now, and I was just trying to see
if anyone has reacted the way my body is.
I realize this protocol has been a lifesaver for
many!!
San

I have been on this forum long time ago , like 2004. I had posted a
link to a protocol that has a 99% success rate in getting rid of RA.
I had RA and successfully overcame it in a year.
Hope you guys try the protocol out.
here is the link: http://www.frot.co.nz/dietnet/reviews/mcferran01.htm
- Chandu

Hi all
For 3 years I did pretty well on Minocin Antx. however, I have been
going through a flair for 4 months. All my joints ache when I kneel or
get into the bath. My left knee is swollen. The tendon connecting my
right thumb is swollen and I cannot give the 'thumbs -up' sign. Between
2 and 4 am I have universal joint pain as I lie in bed. My left knee
really hurts to the extent that I cannot move it. I have chronic
fatigue.
Is the Minocin losing its efficacy? Should I go onto Methotrexate or
will that also stop working? Please everyone share with me to help me
to decide whether to stick to the Minocin or go onto the Methotrexate.
Ken.

Hi Sandra, I got the feeling you may have been offended by one of my posts re:
the beans thing. I sent it in a positive spirit not meaning to offend at all -
I've found that us Aussies just have a different sense of humour to Americans (I
assume you are in the US) and it doesn't always go over well. Otherwise, I've
enjoyed reading your posts on this list :)
All the best,
Leonie

Back in June 06, after being on antibiotic protocol
(doxycycline/erythromycin) for 3 or 4 months, I began to experience
stomach bloating and a horrible ache in the upper right quad section
of my stomach along with nausea. It radiated toward my back/upper
shoulder. It was in fact very similar to when I had a gallbladder
attack 5 years prior, but of course it couldn't be as my gallbladder
is gone now. My AP doc took me off of the antibiotics and
supplements/vitamins I was on. He put me on pancreatic enzymes. I
saw him 2 weeks later as the pain had not let up and I was losing
weight. At that point he took me off the pancreatic enzymes and
referred me back to my primary doc for testing and told me he would
not see me till this all was resolved.
I started through testing. Ultrasound of abdomen/liver/pancreas,
chest xray, abdominal xrays, HIDA scan, cat scans w and w/o dye.
Kidneys were checked out with IVP and scope. All these tests came
back normal.
I have lost about 20lbs since all this started. I am now scheduled
to go to a University Hospital to have another diagnostic procedure
performed on my pancreas/digestive area the end of this month.
I guess my question to all of you is this. I did a search and found
that Pancreatitis can be caused by Erythromycin medications, which
include doxycycline and minocycline and also you can develop Lupus
from taking these medications.
Has anyone experienced any problems similar to mine, or developed any
pancreatic problems, or even abdominal issues that come and go????
I was so saddened by this, as I was hoping that this AP would work
and my AP doctor will not take me back till they figure out what is
going on wtih me.
C

Re: The Loophole That Is Saving People Financially!
Yes, Pam, I have also been a member of ths company's sampler program
since the mid 1980s. I agree with you 100% that this is the best
program to save a lot of money of just about every expense. I copied
the original post that I read last week.
[original post by Vicki G]
As amazing as it may sound many people do not realize how easy it is
to LEGALLY stop paying for their groceries! This is how the one hour
television show began for the company whose website is at:
http://bestprivateprices.com I thought it was very interesting and
decided to check it out. I am very skeptical by nature so the first
thing I did was check out the company. I contacted the Better
Business Bureau and found that the company has had no complaints
lodged against them, I also contacted Paypal who has verified this
company. They told me that they verified the company's licenses, bank
accounts and other paperwork indicating to them that the company is
legitimate. Then I started asking co-workers and friends about this
program and to my surprise 6 out of the 10 people that I spoke with
were already using this program. They told me how pleased they were
with it and how much money they had saved and are currently saving.
So I decided to sign up for this program on 12/20/07. On 12/27/07 I
received my complete sampler membership package and the fun began.
Using their program and the free lifetime membership that it includes
I went to the supermarket ready to make a killing. The cashier rang
up my grocery bill and it came out to $239.87 then I presented her
with the coupons I received from this program and I saved $223.38 -
my final bill was only $16.49! The cashier wasn't the only one
shocked. This program has changed my life!!!

Hi all,
It has been suggested to me that the AP lowers ones immune system and even leads
to some people getting tumours in the long run. Does anyone have any feedback
on this or know of any long term side effects with AP that may not be positive ?
Thanks...
~Leonie

Infiltrating online support groups to glean market data for drugs...in
this case, a new biologic, called "Cimzia", is a pretty ingenious (not
to mention cheap) marketing strategy.
Maz

Has anyone used phototonic therapy (Dr. Brian McLaren) as a supplemental
treatment? I would love to hear from anyone who has!
Jan

Hi guys, I haven't written in a long while because Jacob (my 7 y.o.
son) was doing very well. He's having some issues lately and I took
him to see Doc Sinnott again in late November and he had the series,
however he is still in pain, sometimes pretty bad. I am reluctant
to take him to the rheumatologist, and I thought I would check with
you all and list some of his symptoms, old and new, and see if maybe
someone can help me figure out what to do. I am ultimately going to
have to go see someone, I can barely stand to see him in so much
pain.
Old symptoms:
Finger knuckle swollen at first joint next to hand
He has stiffness in feet and ankles, swelling and pain
Stiffness in knees, swelling and pain
Toe pain
Hand and elbow pain
Occasional chest pain
eczema like patch on penis which does not hurt or itch
New symptoms:
Back pain
More frequent chest pain (he says he thinks it's his heart)
Neck pain
Stomach pain
Shoulder pain
Headaches
Pain in arms and thighs
Two new finger knuckles swollen big in middle joint
Sometimes these new symptoms will cause him to grimace and cry in
pain. I give him naprosyn, but he usually declines saying the pain
will subside. He takes eyrthomycin (is that spelling right?) daily,
probiotics occasionally, supplements, apple cider vinegar (he loves
it!) He still has the old symptoms, but it seems that the new ones
hurt him more. He also tries to use the pain as a reason to stay
home with me and play video games instead of going to school, but I
think (hope) I have it down pretty good to know when he truly is in
need of a day of rest, which is rare but does occur.
I have a bit of "rheumatiz" as they used to say, but I have never
been completely crippled by it, as Jacob was at 16 months. As bad
as the prednisone, methotrexate and naprosyn are, he did get back to
walking after being on them. I took him off the prednisone after
several months and off the methotrexate when his fingernails started
turning black and falling off when he was about 4, that was our
first trip to Ida Grove. It worked wonderfully, now, less than two
months since our last trip, he wants to go back for another
treatment.
You are all in my prayers, and I thank you for all your advice.
Diane in St. Louis

thanks Dee... I am hoping eventually to give up Celebrex because they supposedly
cause ulcers and heart attacks etc (not that they bother me much right now), but
in the meantime they are a godsend for pain etc.
Leonie

**************Start the year off right. Easy ways to stay in shape.
http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489

thanks Emma :)

Hi Kathy - I'm going to be starting AP soon and am now on Humira so
your post interested me. I'm fearful of stopping the Humira (keeps
me upright anyway, although still significantly restricted)when I
start the AP. I would love to hear more about your story and you
can email me if you would like or post here. In any case, what AP
are you doing, when did you start, when did you stop Humira, and how
quickly did you see results from AP? Also, are you on anything
else? Cindy.

Hi Monique
Thank you for sharing your experience. I have never taken methotrexate and do
not want to. I submitted a testimony from another person to help with research.
To combat a flair, I am now on 100 mg, Minocin, 2x day. What hais disturbing
me is that the tendon linked to my thumb is very swollen and the thumb has a
limited range of movement. It all happened quite suddenly when I thought I was
being protected by AP. PERHAPS THE MYCOPLASMA IS HIDING IN THE TENDONS?
Please Monique, help! Also, a tendon behind my left knee has been so painful
that for several morning 4-6 am, i have been barely able to move the leg. Hoping
this increased dosage will bring me back into remission.
Recently, I went for a trial 'Body Communication Process' at a Scientology org
to assist me heal myself. Before the assist I was achy all over, esp in the knee
then 'ping' the pain went after 30 minutes and kept away for two days. I want to
go for 12 hours of this treatment which will cost $220 which is reasonable. One
can get a friend to deliver an assist to one but it is tedious for the person
doing the assist. Anyway, I hope it helps me recover.
Regards
Ken.
Monique Sauve <moniquesauve@...
hi ken
when on mino 200 mg a day for 3 years i had no further joint
deterioration and any i h ad prior to startin returned almost completely
to normal. then off of mino - i developed a sensit to it and it was
making me sick - on mtx i suffered more joint damage than i've ever had.
my swelling is going down now after 4.5 mos on zith and my hands are
looking more normal. my friend who;s had RA since she was 3 suffered
more joint damage on mtx and enbrel remicade etc. now on Mp she is
finally getting her life back. was bedbound pre ap then MP.
monique
Hi Emma
Thank you for the research you are doing and God speed on that. One
conclusion that I have read indicates that although Minocin and other
Antx reduce swelling and pain well, they do not slow down joint damage
as much as the other, more toxic drugs do. I will try to find these
conclusions which I hope are wrong.

Hi Monique
Sorry to be misleading and unclear the extract about methotrexate was not by
me, at all. It was by a friend who tried it after 6 years of AP.
Due to a flair. i have upped my Minocin from 100, 3x a week to 100, 2x a day.
Seem better. What do you think?
Monique. I have tender, squishyswelling on my hand, it moves when touched.
What is this liquidy thing?
I hope you are well.
Ken.
Monique Sauve <moniquesauve@...
hi ken
sent the last message before i read how much mtx is helping you. that is
great. are you taking milk thistle to help your liver? it didn't help me
at all but glad it helps some. as you say we are all differnt. as long
as we find something that works.
best
monique
Emma
Here is a testimony that may assist your research:
YES! After being on the AP for six years, having sustained some pretty
severe damage, and never feeling that my pain had really "left", I started
MTX three months ago.
It is like a miracle . My once, " forever" swollen ankles, golf ball ankles,
are now flat, my hands are no longer boggy in the knuckles, and my pain is
gone. I haven't felt like this in twelve years. Also I was anemic the entire
time on Doxi and had some really off blood values on my CBC ( usually at
least 6 items were flagged) and now that has also returned to normal. A
month of MTX reversed my bloodwork to normal. The only thing flagged now is
a slight elevated RBW.
I thought I was going of have to have a wrist replace and and one fused from
the damage as they hurt so badly and I could barely use them. By doing OT
with Thera-putty I gained strength and the MTX knocked out the pain. I
actually lifted weights using my wrists yesterday for the first time in
years where it did not hurt nor did I hurt this morning.
Also I have gone from taking two 7.5 Mobics a day to only taking 1/2 of a
7.5 at night.
I fought long and hard not to take this drug and now I am sorry that I did
not start it sooner. Maybe I would not have had the severe damage that I
have now and would have had more pain-free days. I just kept thinning I was
herxing on the AP where it actually was the disease becoming more
aggressive.
I am only taking 7.5 mg of MTX now down from 12.5 that I started on.
I know the AP has helped many, but I guess there are some of us that it just
wasn't meant for.
My advice to those on AP that still have pain...Keep up with the Xrays!

Hi Monique,
I was wondering what you meant by a large does for serropeptase eznymes. I take
these also and take 4 a day. I head that they do a good job of helping with the
build up of the scar tissue.
Thanks! Hope you are well.
Roni

hi ken
sent the last message before i read how much mtx is helping you. that is
great. are you taking milk thistle to help your liver? it didn't help me
at all but glad it helps some. as you say we are all differnt. as long
as we find something that works.
best
monique
Emma
Here is a testimony that may assist your research:
YES! After being on the AP for six years, having sustained some pretty
severe damage, and never feeling that my pain had really "left", I started
MTX three months ago.
It is like a miracle . My once, " forever" swollen ankles, golf ball ankles,
are now flat, my hands are no longer boggy in the knuckles, and my pain is
gone. I haven't felt like this in twelve years. Also I was anemic the entire
time on Doxi and had some really off blood values on my CBC ( usually at
least 6 items were flagged) and now that has also returned to normal. A
month of MTX reversed my bloodwork to normal. The only thing flagged now is
a slight elevated RBW.
I thought I was going of have to have a wrist replace and and one fused from
the damage as they hurt so badly and I could barely use them. By doing OT
with Thera-putty I gained strength and the MTX knocked out the pain. I
actually lifted weights using my wrists yesterday for the first time in
years where it did not hurt nor did I hurt this morning.
Also I have gone from taking two 7.5 Mobics a day to only taking 1/2 of a
7.5 at night.
I fought long and hard not to take this drug and now I am sorry that I did
not start it sooner. Maybe I would not have had the severe damage that I
have now and would have had more pain-free days. I just kept thinning I was
herxing on the AP where it actually was the disease becoming more
aggressive.
I am only taking 7.5 mg of MTX now down from 12.5 that I started on.
I know the AP has helped many, but I guess there are some of us that it just
wasn't meant for.
My advice to those on AP that still have pain...Keep up with the Xrays!

it can be hard to know what to spend your money on these days with all the
products being touted as miracle cures... also, I've heard of the Body Ecology
diet, so will give it a go.
Best,
Leonie

Dear Group,
I want to remind you that all past messages are available on our group site

I saw Dr. Whitman, was pleased, and he changed my medication
slightly. I now take minocin in the morning, doxycycline at 6PM,
except for two evenings when I take zithromax. I felt I was doing
well, but then I fell and now my right knee feels painful, stiff, and
weird. I was once told I had chondromalacia (Patella-femur syndrome,
where the cartilage under the patella degenerates at the joint). At
that time (before I was on AP), I was given exercises which kept it
at bay. I am still doing those those exercises, but it is awful and
I can walk only with difficulty. Anyway, I wondered if anyone had
suggestions.
Linda

I live in Chicago and contemplate seeing Dr. Sinnott, who is
recommended on the Road Back website, and written about in "The New
Arthritis Breakthrough." Anyone have anything to say about this
doctor? Had any experience with him?

When i started AP I was on humira and was not taking NSAIDs. as it was the DR
told me I couldnt take any because my blood works showed a problem with my
kidneys. I had prescriptions for narcotic drugs which i couldnt take and work (I
drive a bus) so the humira was working but too risky. I started AP and quit the
humira (also quit the DR) I have NOT taken anything for the join/tendon pain
since i started!!!! (I used to eat alieve) so wether the mino is helping with
the pain or the pain has gone away i dont know. I started AP in september.
I am taking probiotic , milk thistle, folic acid, biotin, multi vitamin,
flax oil, pomegranet, calcium with D, and geletin.
I do have a problem with my hair breaking off and shedding out. I thought
originally from drugs I was on the lats 2 years. but its still falling out and
Ive been off the methetexate for 6 months now. also my nails are very brittle
(Ive been tested for thyroid and they say Im fine) so I take biotin and geletin
for hair and nails.
Now if i could find something to help me lose 15 lbs.... Kathy

Emma.
MTX stands for methotrexate.
Ken.
Mary Ellen Hughes <melhughes2@...
Ken, What does MTX refer to?

Hi Emma
Thank you for the research you are doing and God speed on that. One conclusion
that I have read indicates that although Minocin and other Antx reduce swelling
and pain well, they do not slow down joint damage as much as the other, more
toxic drugs do. I will try to find these conclusions which I hope are wrong.
emluv23@... wrote:
Hi Ken,
I am in the process of compiling all the published articles on Minocin and
doing a critical analysis. It's taken months, as there are now hundreds of
articles, even coming out as recently as the last year. The ones that don't make
a
strong case for Minocin invariably had a study design that was too short in
duration. Most of us know how long it takes to see the turnaround! Many of us
will actually get worse before getting better and the studies are not designed
to account for that. I'm involved in research right now, and hopefully in the
future will have the chance to direct research that will prove what many of us
have found to be true!
Fingers crossed!
Emma
**************
Start the year off right. Easy ways to stay in shape.
http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489

Hi John,
Thanks for your reply ....AS is Ankylosing Spondylitis right ? Very interesting
about the differences between your disease and RA and the different diets and
treatment - you've done a lot of research. It must be a real pain to find the
right supplements, as there are so many additives in most of them.
I have resisted doing the AP for years, but I suppose you have to weigh up the
pros and cons. When you can't live in pain and misery any longer, then you'll do
anything to change your situation. I've discovered that I have to stop being
all precious about staying off drugs. Sometimes you need them.
If you know about Joel Wallach, you've probably heard of Fulvic Acid right ?
(which is the basis of his colloidal products). I take Shilajit tablets which I
get from India. It's like a black powder which is taken from the ancient layers
of earth and contain fulvic acid. After taking Shilajit, I was able to stay off
Methotrexate (the chemo drug) which pleased me no end. It doesn't cure
anything, but it's darn good as an anti-inflammatory and it's a cheap as chips
compared to Wallach's stuff - only around $40 or $50 per month. Also, mangosteen
juice has CoxII inhibitors in it and works good for me, but it's flippin
expensive stuff. All this supplementing business can send you broke :)
All the best,
Leonie

Hi Dee,
Thanks for the feedback about NSAIDS. Hope your flair up comes under control
soon.
Best,
~Leonie
leoniecent@...

Hi Leonie
After one month of Minocin, 3x a week, I came off all NSAIDs for close on 2
weeks and have just restarted taking them after a flair. When one forgets to
take an NSAID then that is a pretty good time to stop taking them.
Good Luck.
Ken.
leonie cent <leoniecent@...
Hello everyone......I read that you have to take NSAIDS whilst on the
AP, to keep the inflammation down so the AP can get into the cells properly. I
currently take Celebrex and was wondering how long you have to keep taking the
NSAIDS whilst on AP ? My aim is to give up Celebrex all together as I worry
about it's side effects. Does anyone have any experiences to share with me ?
Thanks...
~Leonie (Canberra, Australia)

Below is the info re Dr. Mirken.
_____
From: ehgooding [mailto:ehgooding@...]
Sent: Thursday, January 03, 2008 12:13 PM
To: 'Cooky'
Subject: FW: [rheumatic] Re Dr s in DC
Hi,
Is this series of emails what you asked for this a.m.? El
_____
From: ehgooding [mailto:ehgooding@...]
Sent: Monday, December 31, 2007 11:23 AM

Where is the Mirkin medical practice? Can you give an address or
phone#?

Hello everyone......I read that you have to take NSAIDS whilst on the AP, to
keep the inflammation down so the AP can get into the cells properly. I
currently take Celebrex and was wondering how long you have to keep taking the
NSAIDS whilst on AP ? My aim is to give up Celebrex all together as I worry
about it's side effects. Does anyone have any experiences to share with me ?
Thanks...
~Leonie (Canberra, Australia)

Hi All
Any comments on this discouraging appraisal of Antx Therapy by the
Mayo Clinic?
Ken.
Rheumatoid arthritis treatment: Can antibiotics reduce symptoms?
Date updated: May 23, 2006
Content provided by MayoClinic.com
What is Mayo Clinic's opinion on the use of antibiotics in rheumatoid
arthritis treatment?
Matthew, Canada
Researchers continue to explore the possibility that rheumatoid
arthritis may be triggered by some form of infection. If true, it may
be possible to prevent or stop the progression of the disease by
taking an antibiotic. However, studies of the usefulness of
antibiotic therapy for rheumatoid arthritis have produced mixed
results. Here are some conclusions:
Minocycline. Research indicates that minocycline may be effective in
treating mild rheumatoid arthritis.
Doxycycline. One small study suggests that methotrexate combined with
doxycycline may be more effective in treating rheumatoid arthritis
than is methotrexate alone.
Tetracycline and clindamycin. One small study reports that
tetracycline combined with intravenous clindamycin may provide modest
benefit to people with rheumatoid arthritis.
Dapsone. This antibiotic may be effective in treating rheumatoid
arthritis; however, its adverse effects, such as hemolytic anemia,
outweigh any potential benefits of the drug.
Rifampin. This medication is not effective in treating rheumatoid
arthritis.
Antibiotics have many potential side effects, some serious. Also, the
effects of long-term antibiotic use are unknown. More research is
needed to determine what, if any, role antibiotics play in rheumatoid
arthritis treatment.

Hi Dolores
Good to know of your improvement.
I really hope the Marshall Protocol will kill off the last of the mycoplasma..
I have increased my Minocin dosage to 100 mg, 2x a day and wonder how long it
will take to kick in, any idea? In fact, I feel better on my 3rd day ot this
regime, but that may be coincidental.
The tendon attached to my thumb seems to have swelled up, restricting
movement, any suggestions, Dolores?
Have you any convincing argument that mycoplasma causes our various
conditions? I'd love to hear it.
Lovely to hear of your escape to the Carribean last winter as Dec/Jan seem to
be the worst months for my RA. Southern California sounds very enticing, away
from those cold, northern states. keep on the outdoor pursuits, Dolores.
Please keep us informed of your progress, please, details, this is most
heartening.
Ken.
mike rosner <martysfolks2004@...
Hi Ken, You are very welcome. I started on Minocin 100mg twice a day
in January 2005 and went into full remission in May 2007. Went to the doctor in
June 2007 and they could find no sign of S/D, R/A, nor MCTD. My doctors were
amazed. Since I had a lot of Minocin, I continued the medication until September
2007 and then went off for 6 weeks prior to starting the Marshall Protocol. When
I started on the protocol, I was on the Benicar blockade only until October 15,
2007 then added the Minocin at 25mg every 48 hr. Last month I increased it to
50mg every 72 hr. I will increase it in about two weeks to 75mg. every 72 hr.
and then up to 100mg. At that point, I will start Phase 2 of the Marshall
Protocol. I am still symptom free. No doctor told me to go on the Marshall. It
is of my own doing. I had to really scout around to find a doctor who would
monitor me with the protocol. The reason I am doing this is because I believe
that the Marshall Protocol will continue to
kill off the micoplasmas until there are none left and I will be totally disease
free in a couple of years. In 2005, I was bedridden for 8 months and near death.
The same docs who are amazed gave me months to live. They can't believe I am
still here and doing so well. I have absolutely no pain anywhere and do not take
any pain medication. There was a time when just rolling over in bed was agony. I
cried and cried because it hurt so much. I also had Raynaud's which disappeared
during the third month after starting the Minocin. My recovery was uphill all
the way. I just had the most fabulous New Year's. I partied, drank, and danced
for 12 hours and had the best time of my life. I am old and retired but my zest
for living is great.
There is another lady in London that I e:mail with who has S/D. She is doing
very well also.
She said it was cold in London. We are feeling a cold spell in N.Y. too. I hate
it and wish I was as far south as I can get. Last year, we went to Puerto Rico
and St. Croix. It proved to be a very expensive vacation as we were there from
December to May. I am still paying off that trip, so this year, we can't go
anywhere. I am thinking of making a permanent move to
Southern California, so I can be outdoors all the time. I love swimming, hiking,
biking, and just being able to get around without wearing heavy coats, sweaters,
boots, scarves, gloves, hats, etc: I feel so weighted down with so much clothing
on especially in the subways, and buses. So, I stay home during most of the
winter and feel like I have cabin fever. Would love to be snorkeling in the
Caribbean somewhere. Good luck to you, Ken. let us know how you make out. Take
care~~~~Dolores
Ken Pearson <maputo95@...
Hi Dolores
Thank you very much. I am so glad that you went into remission after 18 months
on 100 mg 2x a day.
May I ask how long you have been in remission for and whether or not the higher
dosage had any increased side-effects.
It's so cold here in London, that I think myy joints are worse?!
Regards
Ken.
mike rosner <martysfolks2004@...
Hi Ken, Gwen is right. Steroids and the poison cocktails that are feelgood meds
at first will eventually kill you because they are immune suppressants. When the
immune system is suppressed you become vulnerable to any bacteria that comes
along. Minocin is not only an antibiotic, but an antiinflammatory as well. I
went into remission after 18 months of being on Minocin 100mg twice a day every
day. The best to you. Dolores
Gwen Martin <gmartin4@...
When I first went to the Rheumy, she had me on 65mg Steroids, plus weekly
injections of methotrexate, both of which helped at the beginning,but the side
effects where sending me to an early grave.
So trust me, do not take any, of those drugs, as they are poison.
I gave them drugs up, when the Minocin kick in.
Minocin is the only thing that works for me.
And I am living proof this treatment works.
Thank god for this support group, which has given me back my life.
My GP, has put several of her other patience's, on this drug, who are also
having excellent results.
So the word, is slowly getting out, and the drug companies will be going broke.
Regards Gwen

i thought mirkin had retired? i heard that recently from one of his
former patients who he could no longer see due to retirement.
monique

Hi Phil - Thanks so much for this. It is a bit more encouraging
then. How about the cost though? Is it really $3,000 for the
initial labs and 2 visits? Cindy.

Im the one going to the Mirkin clinic, theres Dr Mirkin, Dr Menon, and Dr Wong
there. I am seeing Dr Menon. Kathy

Hi Gwen
Thanks for your share which is really encouraging but what do you think about
taking Minocin 100 mg, 2x day to overcome a flair.
Ken.
Gwen Martin <gmartin4@...
Hi Ken
When I first went to the Rheumy, she had me on 65mg Steroids, plus weekly
injections of methotrexate, both of which helped at the beginning,but the side
effects where sending me to an early grave.
So trust me, do not take any, of those drugs, as they are poison.
I gave them drugs up, when the Minocin kick in.
Minocin is the only thing that works for me.
And I am living proof this treatment works.
Thank god for this support group, which has given me back my life.
My GP, has put several of her other patience's, on this drug, who are also
having excellent results.
So the word, is slowly getting out, and the drug companies will be going broke.
Regards Gwen

Hello,
I have been suffering from RA for the past 2years, and
my left knee is always swollen. I'm looking to start
AP therapy.
Does anybody know any AP doctor in Atlatna?
Any help on this will be greatly appreciated.
Regards,
Ashis

Hi - Has anyone treated with Dr. F in Riverside,California and if so,
what are your thoughts about him. I have been unsuccessful in finding
a Denver or nearby doctor so I scheduled with Dr. F. I see him on
2/11 and 2/12 and discovered yesterday that his costs for labs and
evaluation exceed $3,000. That's alot money out of my pocket and I
need to feel sure that it is worth it. I'd appreciate any input
anyone has on this. I'm anxious to get started on the A/P, but I
don't want to make the wrong choice. Thanks. Cindy.

I am about to start chemotherapy for secondary lung cancer, the
result of passive smoking.
Theoretically by depressing one's immune system, it might allow
the underlying infection provoking the reactive arthritis to
flare up.
Has anyone experience of this.
Janice
Janice Baker
janice.baker@...

Hello all,
Does anyone know why Strep has to be tested for and treated before one can start
the AP ? Are they talking about Strep throat ? I've never heard of it before.
Is it related to tonsillitis ?
Thanks...
~Leonie

Hello everyone,
Does anyone have a copy of The New Arthritis Breakthrough that they can sell me
or loan me ? I have one on order but it may take a while to get it. Thanks...
~Leonie
leoniecent@...

Hi Gwen,
Did you need the IV antibiotics initially, or just the tablets 3 times a week ?
I am confused about whether I will need IV therapy in the beginning or not.
Thanks...
Leonie

Hello Leonie,
Please allow me to introduce myself my name is Angela and I live near Byron Bay
in the North Coast. Like yourself I have been trying natural remedies to treat
my RA. When diagnosed in Oct'05 my RF reading was considered high at 38 by my
doctor. With my refusal to take all the toxic meds that the Rheumy suggested I
take to myself and my doctor. My latest reading in Oct'07 was 515 as you can
imagine the pain and loss of mobility that I am currently experiencing.
I receive all latest e-mails from the group but for some reason cannot post
anything for myself.
Your e-mail has caught my eye for the following reasons. After 3 months of
continually calling Dr. Mouroukas. He finally rang and explained what his
approach was with this AP therapy. Like you I also am apprehensive of taking
any more drugs that I have too.
In speaking with the doctor he has informed me that the distance between the
North Coast and Sydney would prove to be difficult in doing this AP therapy.
What I would like to know if you do not mind if you do decide to do his
treatment could you advise how the you find the therapy with living in Canberra,
how sick you actually get.
I know you haven't started yet he sounded really nice and for myself I'm quite
interested in starting as I want to get better.
Thank you
Angela
e-mail
tuffys@...

HI, I am going to a Dr in Kingston MD, just north of DC off i-495 and east of
270. its the MIRKIN medical office. I saw DR Mirkin (you can google him he has a
web site) but I had to wait 4 months for an apt and he did not take my
insurance.. but then i was told there are two others in his office (young DRs)
and one does take my insurance, so now im seeing Dr Menon. also there is Dr
Wong. so you can get an appointment with them MUCH MUCH sooner. I think Dr
Mirkin wanted to see me first then let me switch to Dr menon. So far I am happy
with my Dr there and I drive anywhere from 1 1/2 hr to 3 hrs to get there
(depending on traffic) and lose a day at work too. but I am also asking other
questions from her like about thyroid and hormones, as I feel they do a better
job than my local Drs do. So Google Dr Mirkin and you can get the phone numbers
and address from his website (Gabe Mirkin) (ps he is retiring so youll need to
switch to another Dr anyway, Dr menon or Dr Wong) Kathy in WV.
4. ABT doctors in DC metro area?
Posted by: "Janiceesher@..." Janiceesher@...
Date: Mon Dec 31, 2007 3:13 am ((PST))
Hi -
I was diagnosed with lupus a year and a half ago and experienced my first
flare this past fall. I am now on Prednisone (12.5 mg) and have tried taking
Plaquenil but did not have a good response to it. This weekend, I began reading
about antibiotic therapy. I have ordered the book "The New Arthritis
Breakthrough" and am interested in talking with a doctor who practices ABT with
lupus
patients. I would be interested in any information on doctors in the
Washington DC metro area (DC, Virginia, and Maryland).
I am thankful to hear there might be more hope out there, and thank you for
your help on this path -
Jan

Hello everyone and happy new year !
I'm guessing most are on holidays this time of year so probably not the best
time to chat.
Are there any Aussies on the list who know of Dr Con Mouroukas in Sydney ? I
made an appointment to see him in the next few weeks. I'm nervous about
undertaking the AP as I dislike drugs intensely and so have been trying to treat
my RA naturally for a long time. It's an uphill battle though and while I've
kept the pain at bay with the natural stuff, I am still suffering very much.
I've decided I can't take any more, so time to take a different approach.
Hoping to chat with you soon...
All the best,
~Leonie
leoniecent@...

Hi -
I was diagnosed with lupus a year and a half ago and experienced my first
flare this past fall. I am now on Prednisone (12.5 mg) and have tried taking
Plaquenil but did not have a good response to it. This weekend, I began reading
about antibiotic therapy. I have ordered the book "The New Arthritis
Breakthrough" and am interested in talking with a doctor who practices ABT with
lupus
patients. I would be interested in any information on doctors in the
Washington DC metro area (DC, Virginia, and Maryland).
I am thankful to hear there might be more hope out there, and thank you for
your help on this path -
Jan

Hey !
I got no insurance and am suffering from RA (seronegative
spondylitis) need to get antibiotic treatment doctor. do u know any
cheaper doctors in NY providing antibiotic Therapy any guidance
appriciated.
Thank You-
Ravi

Thanks, Lynne. I have already explored the gluten connection and
yes, I agree with you.
Here's the dilemna -- do you go with the AP therapy and hope to zap
this? But then what we find out we have lung involvement -- that
makes me think Johns Hopkins and get on the lung thing.
Minocin will not stop the lung problem, only if the disease state is
put in remission I would guess.
Have talked to a few on roadback who have been helpful too. I'm just
hoping this really isn't the beginning, and that the beginning wasn't
two years ago when the swallowing started.
Thanks again.

Hi,
I am writing with regard to my husband. He is 53 years old, and has
always been in very good health; he's a skier, distance runner, and
has alway been physically fit.
Two years ago he began having difficulty swallowing... food would
just not want to go down (mostly chicken). It was intermittent and
he was sent for a barium swallow showing nothing. This went on for
two years but it really didn't seem to annoy him because it was only
occasionally it would happen.
February 2007 he experienced his first episode of Raynaud's. He's
had two since. His hands have been cold since he was a teen; always
red and scaly in the winter, but never the white, tingly sensation.
He had his esophagus widened in August. At the beginning of December
he was experiencing the swallowing problem again and that's when I
googled "difficulty swallowing +Raynaud's." Of course you all know
what came up.
We notified his gastroenterologist who order some bloodwork. Negative
ANA, anti-scl-70, and anticentromere. He does not have achy joints,
and is not swollen anywhere and still ways 180 pounds as always. He
is still running, has no shortness of breath, and says he feels the
same as he has for years, "feel just great."
He did have a pulmonary function test as part of a physical for an
organization for which he volunteers. His FEV1 was 68 and they were
expecting 75. He has had a history of managed asthma (managed through
exercise) and has allergies. His lung capacity was fine, but at the
time we weren't really paying attention to this test overall. When
he breathes while sleeping, he takes in a regular breath, but seems
to have a short exhale, and seems to almost stop breathing for a few
seconds and I don't know if that's because of the asthma or allergies.
He saw his GP last week to explain the recent events and a chest x-
ray was ordered (negative). He will have another pulmonary function
test next week which will be more extensive. Also will have kidney
function testing.
FINALLY... my question. Is this just scleroderma waiting to explode
or has it already started form the inside out? I have Googled every
combination of symptoms and this seems like an odd coincidence of
occurances. I'm am generally not an alarmed very easily, and I know
that negative tests can mean nothing, but at this point have
confinced my husband that he has or will have this disease.
Any ideas would be helpful and thank you.

http://ratemds.com/social/
I thought this might be helpful.
I just ran across this web site. You can check doctors in various areas of the
world to see how patients rate them. However, you might not find the doctor you
are interested in looking up listed yet. You can add doctors and your own
ratings to the list.
Mary

merry christmas to everyone!!
monique

A Happy Painfree Xmas to All from a frosty London. May we all achieve
remission in 2008, the Good Lord willing. Minocin will work if we
postulate that it will, no doubts permitted!!
Ken.

Happy Christmas
How can I determine that my arthritis is reactive rather than rheumatoid?
Thanks
Ken.
Agentbleu <colourbleu@...
Hey John Happy Christmas
it does sound like ReA yes, and as a fellow victim i Can relate, Im
symptom free from the arthritis now, took cipro 1 g per day, (plenty
of water) 6 week cycles, (2 weeks off) also biaxin at 250mg per day
(got it out of the back). Lamisl did the trick on post prostate pain,
and and fungilin (oral amp b) for about 6 months to clean up the
fungi from the colon (chronic constipation). Be vigilant after cipro,
any sign of campylobactor, and others as is a known risk and set me
back at least a few years.
Thats it in a nut shell that cured my incurable disease (which now at
least the consensus is starting to change some recognizing it is
treatable, just don't go to RISG as they have no clue and never had.
John was one of the first to get me on the right road, Thanks to him
Im still alive!!
Happy xmas all
steve

Hi There All
I woke up this morning without the multi-joint pain that I have
arisen with for the previous 14 days. I had very bad joint pains on a
daily basis between 2 and 4 am and found even rolling over a
traumatic movement. Even my very sore left knee is much less painful
and swollen. Mysteriously, the carnival of pain quietly left between
last night and today. Rude disease.No 'goodbye'. I have done or taken
nothing extra to explain this. Is this the moving around the body and
in and out, aspects of the condition. Alas, like an unwanted relative
from Tennesee who comes and goes, this torturer may reappear at
anytime to put me back on the rack.Is there anything out there to
vanquish this fiendish illness.
Happy Christmas one and all.
Ken.