Diseases and conditions

Hi Geoff ,

Love your response to me " cant open the Pepsi " post . 20 lashes for me not being able to ask for help .

:( . I do agree with you 100% that pride can be annoying and interfering . There is nothing to be ashamed of in asking for help . So next time I want to open a bottle of Pepsi and cant I hope your around to ask someone to help me open it < big grin

socjog

PS thanks for sharing that Baby food jar scenario with us .

Hi Karen ,

What an interesting story . Thanks for sharing . I hope to submit my own crazy saga with these diseases shortly to Ethel and Chris. I just wanted to drop a quick thank you note . It is always refreshing to hear someone had a similar struggle and I appreciate you taking the time to write us all .

BTW I think this best drs are those that have suffered some sort of ailment . Your auto immune disease will only enhance your ability as a dr . Best of luck with your studies . Warm regards,

socjog

Mariann

I was glad you brought up this topic as I have wondered about those of us who has not responded as hoped,

I started AP shortly after my diagnosis of systemic scleroderma we/ lung involvement almost 2 years ago, as of yet, I have not seen any improvement and as of this week I have had to be placed on full time oxygen and are undergoing tests to check for pulmonary hypertension. My skin has done a number on my face, arms and hands and is currently going after my legs.

I have only recently been able to access the IV's and I am pushing for more of them but I have had a lot of resistance from my doctor and believe me where I live it is very difficult to find a doctor that actually believes in the AP.

Now like one other post mentioned I want to clarify what I have am aware of and have adopted to my lifestyle

- brand name Minocin MWF 100mg.

( has been altered as to see if another combo is more effective)

Clindamyacin IV's

Probiotics we/ sugar free diet

Digestive enzymes/ salmon oil /flax oil

Various supplements

I have been very conscientious of my diet and the time of day I take my mino and the 2 hour window

I realize that this is a long term healing plan and I am not about to give up as the alternatives are not a option. I have read about the success rates of the AP and realize that not everyone has this immediate reaction. I am not sure why I posted this I guess those of us who can not quite relate to the majority of the group need some special counsel. I know often when I read certain posts I feel good that this can happen for some and yet at the same time I fear.

Does anyone else relate to this ?

Take Care

Brenda

systemic scleroderma 2 years

pulmonary fibrosis

esophagul fibrosis

raynauds

sjogrens

Repost for someone here who needs it... please refer to the end of the last paragraph.

Jim, you weren't the only one to ask this question, so I'm going to post my
reply to the group for anyone else that might be interested.
There are a number of things you can do on your own to reduce the toxic
load.
I strongly recommend anybody - sick or well -do parasite, kidney, liver and
bowel cleanses.
Dr. Hulda Clark has excellent ones on her website.
www.drclark.net/info/info.htm. It is recommended the parasite cleanse be
done at least two times the first time you do them.
Colonics are also helpful. A good health food store should be able to
direct you to someone who does this in your area. Keeping that colon
'clean' is vitally important.
If you've had disease for a while, and/or you've taken medications over your
lifetime, consider getting checked for candida and leaky gut.
(www.gsdl.com). We've found olive leaf extract by Seagate, slippery elm and
l. glutamine to be quite effective for many people with these problems.
Olive leaf extract is not only antimicrobial, but it is an immune enhancer
as well.
If you've had root canal work done, check for infection at the site. This
problem usually goes on undetected but could very well be the underlying
cause of disease.
Infra-red saunas and peroxide/epsom salt baths also rid the body of toxins.
Drink looooooots of filtered water. Water not only carries off toxins, it
carries nutrients to the cell and lubricates the joints.
The goal of the therapy is to rid the body of infections anywhere they may
be found.
There are other programs and technologies that you can use as well, but I'd
start with the ones listed here first.
You do know the importance of a good probiotic?
. . . . and while you're working on the above, don't forget the importance
of a good diet and appropriate supplements.
With all the medical problems I've had, my immune system has been badly
compromised. Even with all I do to keep myself healthy, in the last three
years I've had to deal with proteus mirabilis, CMV, EBV and candida.
All were cleared using readily available means.
Ethel

Hi Gang! Geoff here.

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Geoff
soli Deo gloria

www.HealingYou.org - Your nonprofit source for remedies and aids in fighting
these diseases, information on weaning from drugs, and nutritional kits for
repairing damage; 100% volunteer staffed.

Hi Tim, I have sent you a list from the states mentioned. I highly
recommend Dr Sinnot in Iowa. He is a humanitarian as well as an
excellent doctor.
Barb

Kimmie,
if you click on messages back a few days I did post some studies I
have.
i can give you s\them as well in an email. if you need or cannot find
them.
It is suspected that it does work from the studies being done.
Hang in there sounds like perhaps a combio is neded like Clinda mycin
with the minocin.That worked with me.
Love
Marge

ago. Her Rheumatoid factor lingers around 70 or so. Anyhow she has
these large lumps in various places on here body. She has one on the
back of her thigh just under her buttocks the size of a hand. It's
like her muscle is really hard and firm in that spot. She had asked
me about it some time back as I have RA too. I told her I thought it
was odd. She's been seeing different doctors and asking about these
big lumps. Her most recent doctor now thinks she should get some
sort of brain scan. My friend tells me they are checking for MS. My
questions are...Is there a Rheumatoid factor with MS? If any here
have MS what are some of the signs and symptoms and how are you
treating it? Doe MS respond to AP? My friend is scared and any info
would be much appreciated.

Hello:
I would like to share this article so that it will bring to
light just how this "chicken soup" stuff works. The article features
the work done by Dr. Trentham (Harvard) regarding UC II. I myself,
have never tried it. But may look into it in the near future for
alternative/palliative modality.
READ ON:
INTERHEALTH INTRODUCES UC-II, THE ONLY UNDENATURED TYPE II COLLAGEN -
Harvard Research Leads To Breakthrough In Arthritis Treatment
BENICIA, Calif., September 12, 2001 Based on extensive clinical
research conducted at Harvard Medical School, InterHealth
Nutraceuticals announces the introduction of UC-II, the only
undenatured type II collagen in the marketplace. Often referred to in
the scientific literature as "native" type II collagen, undenatured
type II collagen (branded UC-II) works with the immune system to
promote healthy joints, while improving joint mobility and
flexibility.
Hailed as an arthritis breakthrough, UC-II has been scientifically
proven to substantially improve immune-related arthritis symptoms,
including morning stiffness, joint tenderness and joint swelling. In
one study conducted at Harvard and published in the prestigious peer-
reviewed journal, Science, 28 patients with severe rheumatoid
arthritis taking undenatured type II collagen for three months showed
substantial improvement, while four patients recovered completely. In
total, there are six human clinical studies that support the efficacy
of undenatured type II collagen in the treatment of arthritis.
Importantly, absolutely no side effects have been observed with any
of the patients who participated in these studies.
The most crucial distinction about UC-II is its undenatured state.
According to Dr. David E. Trentham, the lead Harvard
researcher, "Type II collagen must be in its native (undenatured)
form to be effective." While other type II collagen products have
been on the market for some time, these products are typically
subjected to harsh chemical or high-temperature processing that
result in denatured or hydrolyzed type II collagen. Unlike UC-II
(undenatured type II collagen), there has been no scientific evidence
published in peer-reviewed scientific journals to substantiate the
efficacy of denatured or hydrolyzed type II collagen in the treatment
of arthritis. In fact, one study, published in the Proceedings of the
National Academy of Sciences, states that "denatured type II collagen
has no observable effect on the incidence and severity of the disease
(arthritis)."
"Today, nearly 43 million Americans suffer from some form of
arthritis and that number is expected to grow to 60 million by 2020,"
stated InterHealth President and CEO William Seroy. "Solid scientific
research shows that UC-II can make a significant difference in the
quality of life for many of those people, allowing them to be more
active and independent because the painful symptoms of the disease
are minimized or eliminated."
Dr. Trentham will be presenting his research on undenatured type II
collagen at the EXPO EAST conference in Washington, D.C on October
12, 2001. His presentation will be held 2:00 3:00 p.m. in Room 13
at the Washington Convention Center. At that time, Dr. Trentham will
discuss how and why undenatured type II collagen has demonstrated
profound benefits in the treatment of immune-related arthritis.
Attendees will also learn the difference between undenatured and
denatured type II collagen, and come to understand why only
undenatured type II collagen is effective in the treatment of
arthritis. Dr. Trentham will also present information comparing
undenatured type II collagen with MSM and glucosamine/chondroitin
sulfate, other commonly available arthritis supplements.
Dr. Trentham's seminar is sponsored by InterHealth Nutraceuticals,
maker of UC-II, the only source of undenatured type II collagen
available in the marketplace. UC-II is protected by U.S. Patents
5,645,581, 5,637,321, 5,529,786, and 5,750,144 and worldwide patents
pending.
Catherine

Hi all. I have a friend who was diagnosed with RA over a year ago. Her Rheumatoid factor lingers around 70 or so. Anyhow she has these large lumps in various places on here body. She has one on the back of her thigh just under her buttocks the size of a hand. It's like her muscle is really hard and firm in that spot. She had asked me about it some time back as I have RA too. I told her I thought it was odd. She's been seeing different doctors and asking about these big lumps. Her most recent doctor now thinks she should get some sort of brain scan. My friend tells me they are checking for MS. My questions are...Is there a Rheumatoid factor with MS? If any here have MS what are some of the signs and symptoms and how are you treating it? Doe MS respond to AP? My friend is scared and any info would be much appreciated.

Thanks,

Kimmie

There must be something to the chicken cartilage! I just heard about it on the tapes by Dr. Joel Wallach, Dead Doctors Don't Lie, and Live Doctors Do Lie. He mentioned the chicken cartilage several times in the tapes! Something to think about for sure!

Diane H. from RB board

Jeffery Abplanalp <jefferysa@...

Came across the following article in a journal:
Recovery: Undenatured Type II Collagen
A review paper entitled "Treatment of Rheumatoid Arthritis Using Undenatured
Type II Collagen," was published in The Original Internist, Volume 9: 12-15,
2002. The paper discusses the human clinical studies at Harvard Medical
School, which showed that small doses of undenatured type II collagen from
chicken cartilage work with the immune system to improve the symptoms of
rheumatoid arthritis, without side effects, through a process called "oral
tolerization." The paper also asserts that since osteoarthritis is often
caused and/or exacerbated by an underlying immune disorder, undenatured type
II collagen may prove useful in promoting joint health in osteoarthritis
patients as well. The article noted that only undenatured type II collagen
has shown benefits in improving joint health, while denatured type II has
proven ineffective.
(UC-II is the only source of undenatured type II collagen available as a
dietary supplement, protected by U.S. Patents 5,645,581, 5,637,321,
5,529,786, 5,750,144 and world-wide patents pending.)

Hi:
Do you know of any AP docs in the Kansas City, or surrounding, area?
(Missouri, Iowa, Nebraska, Oklahoma...)
I have been to Mercola and may return to see him, but it would be nice to
find a doctor closer to home.
Thanks,
Tim Anderson

Came across the following article in a journal:
Recovery: Undenatured Type II Collagen
A review paper entitled "Treatment of Rheumatoid Arthritis Using Undenatured
Type II Collagen," was published in The Original Internist, Volume 9: 12-15,
2002. The paper discusses the human clinical studies at Harvard Medical
School, which showed that small doses of undenatured type II collagen from
chicken cartilage work with the immune system to improve the symptoms of
rheumatoid arthritis, without side effects, through a process called "oral
tolerization." The paper also asserts that since osteoarthritis is often
caused and/or exacerbated by an underlying immune disorder, undenatured type
II collagen may prove useful in promoting joint health in osteoarthritis
patients as well. The article noted that only undenatured type II collagen
has shown benefits in improving joint health, while denatured type II has
proven ineffective.
(UC-II is the only source of undenatured type II collagen available as a
dietary supplement, protected by U.S. Patents 5,645,581, 5,637,321,
5,529,786, 5,750,144 and world-wide patents pending.)

Hi,

I am putting a general question out for anyone w/ DM who has tried AP. Any input on your experience would be appreciated. I have a reluctant rheumy and I want to go on AP. I need to be as informed as possible before I push her on it.

Thank you.

Teri

I'm glad to hear from you. I've often wondered if there's any people
the AP doesn't help and how we can get more feedback from them. It
doesn't present a true picture to only hear from the success stories.
Perhaps a mycoplasma infection is only one of the most common causes,
and doesn't cover all possible cases. I would really like to have a
better picture of what percentages are involved. Most of the real
problems come from people who are trying AP as a last resort and
sometimes when it's too late.
One thought that occurs to me is that with the inflammation under
control, the Minocin may be able to work now. Another possibility that
comes to mind is that your son's JRA may not be caused by a mycoplasma
infection in this case.
I really wouldn't know, since I'm just the computer boffin. I hope
things work out well in the end though.
--
spwhite@...

Regarding JRA and regarding 6 months (or even 2 years) on AP:
My heart goes out to your twins with JRA, and to you. My son, 16, has
systemic JRA, onset 3 years ago, sudden and severe. Unfortunatley, the AP
has not worked for him. We were incredibly faithful for 2 years; there were
probably confounding situations, such as the fact that he was on prednisone
beginning about the time he started AP. But for whatever reason, the AP has
not helped or at least not helped enough, and we probably waited too long to
get him on an DMARD. He has major joint damage in his hips even though they
never bothered him - it was always his knees - until this year - after being
on AP for over 2 years. He may very well end up having his hips replaced.
He's in physical therapy, and I do highly recommend that - in water.
He still takes minocin. We haven't given up on it. But he's also
taking Remicade and azulfadine and methotrexate. Don't everyone scream in
unison now. Many of you know this was not our choice, but finally, even
the AP doc and other alternative docs were saying, "You've got to get this
inflammation under control." It was eating his body up.
He's much better now (except for the hip damage). He's got a great
attitude, and it has not ruined his life by any stretch of the imagination.
He's not as socially active as he would like to be, for sure, but he's
making his life work and work well. We thank God for that.
I don't write this to discourage anyone or to cry sour grapes. It's
just our story. His story. It hasn't worked the way AP was supposed to
work. People may come back with all sorts of things they think we didn't do
right; please spare me that. We certainly have done our best and have given
it all.
If you are new to this, just listen to the veterans and trust your
heart. This is a great support group. It just doesn't work out for
everyone. And the ones it doesn't work for usually just disappear. I
haven't disappeared, I just peak in every once in a while.
Love to you all, Jan

I don't know if it helped the AP work but I also did a parasite cleanse.

Regards,

Dee

Anything you do to lower the toxic load helps your body respond better to the AP.

Ethel

Just for you DEBB

The attached is from

T. McPherson Brown, J. S.Bailey, I. I. Iden & H.W.Clark - Antimycoplasma Approach to the Mechanism and the Control of Rheumatoid Disease - published in 1992

Debb, I've read it several times, I went off for 4 weeks once when I had a
drug allergy (to something else, thankfully) and was fine for those 4 weeks.
--
Jean
jpro2@...

Here is a website that gives times around the world. Very handy on the computer.
http://www.timeanddate.com/worldclock/
Denise [INLINE]

HI all, is there an AP DR in TN? one of my correspondents is requesting info, could anyone send me the DRs number? and could someone send me the protocol so I could forward it? AND...I thought I just read recently, Ethel, Chris? that Dr Brown said that one could go off the minocin for up to 4 weeks before losing ground? did I dream that or is it somewhere in the protocol? I am asking that one as I went off the minocin yesterday in preparation for my upcoming surgery...I was told that the tetracyclines can cause reactions with anesthetic...so I went off...thanks everybody...Take care, DEBB

Hi Mariann,

I had a lone time before I saw much improvement at all on AP. Only my brain fog seemed to get better at first. But there was no other alternative treatment that I wanted to go on other than AP. I just had faith that it would work. Slowly it began to work for me. I know it was over 6 months before I saw any improvement in any joint. I finally started to see some improvement at almost a year...but it was small. But I was happy to find any improvement. I had some more improvements during the second year but they were small compared to what I experienced at the 20 month mark with minocin. I had changed my diet earlier and all of a sudden I started to see significant improvement at that time and I am continuing to improve. Marge always said to wait for the 2 year mark...and she was right!

All of our bodies are different. We all react to drugs differently. There are other things that can slow you down too. Make sure that you don't have any strep in your body with an ASO Teter test (Dr. T. has probably done this but just check to make sure). Any infections in our body will keep AP from working well. Also make sure you do not have any yeast issues. Sometimes you aren't even aware that you have a yeast problem. Yeast will keep AP from working too. Make sure that you are taking probiotics to help prevent yeast. Diflucan or sporonox will help kill the yeast if it is affecting you.

One other thing is that you might need to switch to another antibiotic. I don't know which one you are on or how much. You could need to up your dose too. Please let us know what and how much you are on.

Keep on hunting and digging into your problem as to why you are not responding yet. I wouldn't give up on AP...it's the only therapy out there that is not toxic for us and it does work even though it can be slow going. I've never felt better or gotten any better results on any other drug. It did take me a while (and I'm not all the way better yet) but I will get there. I know it in my heart!

Jeanette

And then you say you won't be treating me at all......................there are 2 kinds of doctors in this world, those who think they know it all and those who are willing to learn. Too bad there seems to be more of the first kind.

Regards,

Dee

Hi Mariann,

My RF factor skyrocketed after 6 months on Minocin 100 mg MWF. I took that to be a sign that it was flushing out all that was lurking inside. I increased to 200mg MWF and 6 months later RF factor was greatly reduced and I felt good. I don't know if it helped the AP work but I also did a parasite cleanse.

Regards,

Dee

Debbie,
I am so happy that you found this therapy for your daughters. I can
appreciate your wanting to keep them off the toxic drugs. There are others
on this list with children who have JRA and I'm sure you'll hear from them.
Wishing you continued success.
Dee

hi mariann,
i will reach the two year mark taking antibiotics this march. last june i experienced real progress with the symptoms that have lasted through today. no fatigue, less pain, less achiness, way less morning stiffness. so in my case a good 16 months before i had real lasting improvement. consider this - one of my labs revealed a high aso titer 423, doc suggested we treat this with amoxicillin, so i went off the minocycline and on to a 10 cycle of amox. i dont know if this did the trick, but after two rounds of the amox - two months apart, i began to get better. dr. brown mentions this aso titer situation in the book. i would suggest to you that you read, or re-read the book, paying close attention to the part which addresses an individual who does not seem to be responding to the ap. also, see if you can get that aso titer done, that may be your stumbling block, i have read that the high titer is very common in ra.
sorry about all the lower case letters - my caps lock is jammed - three kids whom i share my office with....
linda king

I just started to turn the corner at 6 months. Major improvments came after the first year. Now I have full remission.

Gary

Hi Group,
I agree with Barb here. It took me 3 full yrs to get completely better
and 6 months is not enough. Some of us have tough cases. I was much worse and
then alittle better then down for 3 or 4 months. Now I am fine, so don't
think because you are not getting better it is not working although it feels
that way. I started on on Tetra 15 yrs ago first for skin problems, then I
found dr. Brown and got the IV's in Virginia and DR. Oliver put me on plain
Tetracycline MWF I stayed on this for 12 yrs now on Doxyclyline. I am fine
at 54 better than ever blood test fine. I do get tired but no pain and I
have a pretty full life. I have to stay out of the sun but well that is not
that bad considering all I went through. We want out of pain and fast but I
still think this is the safest and best way to get there with out the bad
drugs. I have RA and Discoid Lupus Just My View Chris from Ohio.

Hi Debbie,
I am so very happy you were able to start the girls on antibiotics
through your husband...What a blessing. I will e-mail you a list of
doctors in TX. Hope this helps.
Love, Barb

Hi,
First thing I would like to say is"thank you for all the helpful
posts I got about MS". Thanks for taking the time to reply to my
question.
I have been on Minocin a little over three months. I was diagnosed
with Localized SD(sometimes refered as Morphea). I have visited quite
a few BBs and have only come across a few people on AP with the same
condition as me.
I have tried to search this on this BB but have come up with nothing.
Is there anybody on this borad with the localized form of SD? If not
do any of you have any info on this-and AP.
Thanks and have a great day!
Chelsie

Hi Everybody I would just like to know if there is anybody who reached the 6 month mark on AP & did not see any improvement at all. I'm really confused about this. I saw Dr. T. this week & he told me if there is no improvement in 6 weeks he is taking me off minocin because it is not working for me. I have RA for 5 years & taking minocin for 6 months 200mg.a day everyday. I would really like to hear any input on this because I don't want to give up the AP & I have been very depressed & lost a lot of hope. Thank You So Much. Mariann

Lee wrote:
"I said well, I had used Mino in the past but since I was nursing I used
Erythromycin. she said only erythromycin? Wow, that's great and it worked
for you."
A lot of M.D.'s think the AP works not due to any antibiotic action on the
part of the drug(s), but instead due to their anti-inflammatory properties.
They are usually quite surprised at anything which suggests this
preconception may be in error, perhaps she is one.
Geoff
soli Deo gloria
www.HealingYou.org - Your nonprofit source for remedies and aids in fighting
these diseases, information on weaning from drugs, and nutritional kits for
repairing damage; 100% volunteer staffed.

So glad you asked :) A doula is a woman who has been trained in childbirth.
I support the mom and dad during birth. Doulas have alot of tricks up their
sleeves to help mom cope, keep her calm, and help her to position the baby
just right so her birth won't be unnecessarily drawn out. I provide
physical and emotional support. I'm not just a glorified labor coach,
oh-no-no-no. I'm much more than that :)
I'm also not just for moms. Dads get alot of benefit from doulas. I help
bring them closer to their wife/partner during birth and instruct them on
the best way to help. I've done births where dad was sole support person
and they just wanted my reassuring presence in my room, all the way to me
being sole support person and the dad basically looking on. I take the
pressure off for him - and this ends up taking the pressure off mom too
because a woman naturally still plays *hostess*
I am usually very welcomed by hospital staff. There is so much paperwork
involved in everything anymore that the nurses especially get frustrated
that they can't help the mom as much as they like. I'm not a midwife (but I
did stay at a Holiday Inn Express last nite - ROFLMBO! Love those
commercials) because I don't perform medical tasks - I don't do fetal heart
tones, I don't do any checking of the cervix (I know where she's at by how
she's acting and where her emotions are at), and unfortunately I don't
catch babies. But I'd love to *assist* someday :)
To find out more information a good place to look is www.dona.org - this is
the association I am certified thru. One of the most rewarding things I've
ever done I tell ya. I absolutely love it! Every time I see that baby come
into this world it reminds me of what a miracle God has given us! I bawl
every time :)
Thanks for asking Geoff! God Bless!
Jodi Fadness, CD (DONA)
SAHM to Ashlea (6yrs), Katelyn (3.5yrs), Lars (22mos)
Minnesota Doula

Hi Gang! Geoff here.
Not to pick a nit or anything like that, but if you are like me and
sometimes you run off at the fingers and just whack that send... it could
really help those of us who are "cryptographically challenged" if you set
your e-mail client to automatically spell-check your note before it goes
out. I do this a lot:
Whe usre wheny ou loo at
and the spell-check is a whiz at drawing my attention to deciphering this
sort of thing prior to posting. Of course, it doesn't make my writing any
better, but at least I can read how silly I sound later if I'm hungry for a
bite of humble pie. :}
To do this in MS Outlook Express, go to the drop down menus at the top and
click:
Tools
before sending"
Other e-mail programs have similar options, browse through the menus and/or
preferences and you'll find yours in short order.
HTH!
Geoff
soli Deo gloria
www.HealingYou.org - Your nonprofit source for remedies and aids in fighting
these diseases, information on weaning from drugs, and nutritional kits for
repairing damage; 100% volunteer staffed.

Hi Jeanette,
This is really good - thankyou all very much for hosting these chats and I hope
many people turn up and benefit from the conversations. If I can get up at 6
a.m. I'll join in but (understatement of the year) I'm not real good at getting
out of bed :)
I should mention that Mark (Holmes) in this group tried to set up chats a couple
of years ago. So now Mark I hope you'll have tons of company and I hope you
will join in :)
Thanks,
Chris.

OK, is there something in particular that rheumies eat or drink that
makes them this way?? I had a very similar situation...mine saw that
I had my breast implants removed (in my records haha) and went on and
on how they don't cause any problems. I said I didn't come here to
debate breast implants...can you just treat me, and he said, no,
there is nothing wrong with you. I empathize.
ML

Hi Everyone,
I am so pleased to announce that we are starting weekly chats here on
rheumatic.org! The weekly chats will usually consist of getting to
know each other on a more personal basis, giving help and support to
those new on AP, answering questions about AP and our health issues
and in general having fun doing it!
You do not have to be a great typist to join in (you should see some
of our typo's). The chats might seem kind of strange at first, but I
want to assure you that you will get the hang of it quickly.
Our chat schedule will be as follows:
Mondays - 9:00 p.m. Eastern Time (8:00 p.m. Central, 7:00 p.m.
Mountain, and 6:00 p.m. Pacific Time (somewhere around
12:00 Noon on Tuesday for those of you in Australia I think)
Wednesdays - 3:00 p.m. Eastern time (2:00 p.m. CT, 1:00 p.m. MT
and 12:00 noon PT (early morning for Australia on Thurs.)
Thursdays - 9:00 p.m. ET (8:00 p.m. CT, 7:00 MT, 6:00 p.m. PT
I am sorry I can't be more specific for Australian time. I think you
are about 15 or 16 hours ahead of Eastern time depending upon which
time zone you are in. Those of you in other countries will have to
find out what your time difference is. I believe England is about 6
hours ahead of U.S. Eastern Time. If you do find out your equivelent
chat time for your country, please let me know so that I can post it
to make it easier for others to find us.
Our chat facilitators will be myself (Jeanette), Marge, Betty, Barb &
Mimi. We are looking forward in the future to bringing you new
features to the chats such as book chats (taking a book about AP and
discussing it chapter by chapter), etc. We will be e-mailing you in
advance about these.
I will post a reminder each night before a chat day so that you will
be reminded to come to each chat and with the reminder post
instructions to get to the chat room. You aren't expected to be at
every chat but we want to encourage you to come as much as possible.
If you forget a chat time, Chris has graciously posted the chat
schedule on our support page down toward the bottom where you see the
place to click on for the chat room.
I am eagerly looking forward to seeing a lot of you at the chats and
getting to know you! This coming Monday night will be our first chat.
Jeanette
P.S. If you have any questions, please feel free to e-mail me at
leland@....

I got a story for all of you! I went to a new rheumy bec she is also an allergist/immunologist and since my allergist/immunologist no longer takes my ins I figured I'd see this woman. I went to her office on Mon and I was in the waiting area and she wanted medical records so I gave them to her and she starts going through them and asking me questions in the waiting area: she is behind the desk with glass windows. I also gave her my medication list as it was with the records. She asks why I am on antibiotics so I tell her that a rheumy I see in NJ prescribes them for me. She says she doesn't believe in tx with abxs. I tell her that I feel better since I have been on them. She says that is a placebo effect. I tell her that I am not the only one who has benefited from them. She says I don't believe it and I won't treat you with abxs and asks who prescribes them. I tell her that the rheumy I see in NJ does. She says she won't treat me at all and I should just
continue with him. I said I was looking for someone closer (I live in NY and I wanted a local rheumy as he is at least 75 mins away), but since she doesn't want to see me that is fine with me. I tell her that there are other drs that treat with antibiotics. She says you won't find one in NY. I said I don't think she is correct about that and I also tell her that there is a well-known researcher/medical dr in Boston, Dr. Trentham, that prescribes antibiotics. She says oh yes, minocycline for RA, and I said he also prescribes antibiotics for scleroderma and lupus. She says that she doesn't know about that but she will be going to a meeting in two weeks. I said I hope you learn something there but I doubt you will because you are closed-minded. She tells me that I am close minded and I responded that I came here with an open attitude and I was hoping that I could sit down with the dr and if we didn't agree on everything that is okay but maybe we could meet halfway after
an intelligent discussion. I said I can see that I was wrong. She tells the secretary to stop copying my medical records and she starts walking away. I get me records back from the secretary and I say to the dr that she is the most rude and arogant dr that I have ever met. I walk out of the waiting room muttering that she is an a**hole. Unfortunately, there were no other patients in the waiting area. I sure wish there was so they could hear what an a**hole she was!
Carol from NY

Hi Socjog, couldn't find KB's message related to mercury, but mercury
has LOOONNGG been proven to have adverse affects ranging from joint
pain to autism!! Even the federal government ackowledges this and
has agreed to wean mercury out of vaccines. The mere vapors of
mercury can be toxic (learned that in basic chemistry). <Saying
this
solution, and there is a simple test to show the levels, but PLEASE
don't minimize mercury's potential to cause havoc <including but not
limited to autoimmune disease
believe our problems are bacterial, yes, but as one doctor put it to
me..."why are our bodies so prone to these bacteria...this is the
question!" She believes <based upon research
metals in the body inhibit our bodies natural immune response to
fight off the infection. I'm not saying it is my problem, or yours,
but that it may be some people's. Sorry, had to dabble on this one.
Take care, ML
http://www.atsdr.cdc.gov/tfacts46.htmls
http://www.atsdr.cdc.gov/alerts/970626.html
The following is an excerpt from a long article at the autism
research institute's website. All of the research is credited. The
autism research institute is devoted to credible research.
http://www.autism.com/ari/mercurylong.html
"Atypical responses to mercury have been ascribed to allergic or
autoimmune reactions (Gosselin et al, 1984; Fournier et al, 1988),
and a genetic predisposition for Hg reaction may explain why
sensitivity to this metal varies so widely by individual (Rohyans et
al, 1984; Nielsen & Hultman, 1999). Acrodynia can present as a
hypersensitivity reaction (Pfab et al, 1996), or it may arise from
immune over-reactivity, and "children who incline to allergic
reactions have an increased tendency to develop acrodynia" (Warkany &
Hubbard, 1953). Those with acrodynia are also more likely to suffer
from asthma, to have poor immune system function (Farnesworth, 1997),
and to experience intense joint pains suggestive of rheumatism
(Clarkson, 1997). Methylmercury has altered thyroid function in rats
(Kabuto, 1991)."

I will share with you in regard to mercury . Its just an opposing
view but it may shed some light on some ideas here so bare with me .
fact ones body has to much exposure to mercury . Its a cheap blood
test and not invasive to have done ( one needle stick) . I am NOT an
avid believer that mercury fillings have any effect on our body and
or auto immune disease . There is no scientific credible evidence to
support a relationship between mercury filings an our symptoms .
There IS a lot of testimonial evidence only . For us to remove all
our fillings is A) dangerous because now you ATRE releasing all that
mercury into the blood stream and this could cause problems . B)
costly C) very invasive as I for one have problems with all my heart
valves and having that extensive oral work done in my mouth can pose
a potential for greater problems than we already have with our auto
immune disease .
looking for an easy solution for ones symptoms that has NOT be
proven . I d am of the belief that my auto immune disease is based on
bacteria and taking the mino has proved that as I have become
healthier . I would truly encourage those thinking of removing all
their amalgams / mercury to research this completely . I do encourage
all of us to not have any more mercury amalgams put in our mouth as
it is a controversial topic neither proved nor disproved . .

Jim,
I believe there is probably other things going on. I would suspect both
yeast overgrowth (I think sporanox 200mg is extremely efffective and benign)
and anaerobic bacterial infection (treat with clindamycin injections given
to oneself in the thigh daily 300mg to 600mg or clindy IVs for 15 days) or
in my case I used bicillin injections which is a penicillin normally given
for gonorhea it was EXTREMELY EFFECTIVE in reducing my pain that was
unbearable and unrelenting. I think you just need a little extra and
different abx to cover circulating pathogens. Hang in there. Dont give up.
You can do this, but it is terrible painful at first. Once you get some of
these other pathogens under control, then the mino might be much more
effective and more manageable. Kathy

Hi Jim,
I understand your wife and you being tired of fighting this. My road was
alot like yours and finally a smart lady explained to me that I needed to
start with a lower dose and not keep dying from the pain. WAY TOO BIG of a
herx! I was almost in remission at 6 months on this lower dose so believe
me, it works even at a lower dose! Hang in there and start with a dosage
you can live with. Remember too, you are hurting because IT IS Working but
don't kill yourself!!
Roseanne

Please bear in mind that this mailing list goes out to over 700 people,
so it's easy to saturate everyone with a lot of posts.
If your message is of general interest to everyone, post it to the
mailing list by all means. If your message is more personal (eg,
"congrats", "good to see you", etc), please consider sending it
directly as a private email.
--
spwhite@...

Hi Liesl,

WOW...that's terrific! I'm so glad to see another doctor that knows about AP. Thanks for telling us about her.

I'm so glad to hear that your little one is doing so well!!!

Love,
Jeanette

On Monday just for her 18month check up.She is fabulous the doc we saw was my old primary (we switched to a new guy this past year same practice) I was telling her how leery I am of vaccinations due to my DM and she asked how my DM was doing etc.Told her I flared last year (she said that is common and went on and on) and then I told her I used antibiotic therapy she asked Minocycline or Doxycycline?I said well, I had used Mino in the past but since I was nursing I used Erythromycin she said only erythromycin? Wow, thats great and it worked for you Anyway it was nice to see how receptive she was, and even somewhat knowledgeable regarding AP and DM I just keep trying to spread info!!

Liesl (Lee) Dutro, Marketing Coordinator

hci

7011 Campus Drive, Suite 200

Colorado Springs, CO 80920

Visit our website at www.hciusa.com

To unsubscribe, email: rheumatic-unsubscribe@egroups.com

Debb,
I will pass along what my hand surgeon told me in July when I had the
dupuytrens conteacture release.
I was told 1 week before..NO aspirin, VIt E, Nsaids, ginko as they
encourage bleeding.
If I can help in any way, let menow
Love
Marge

candidly about your AP . By doing so you were able to educate her and
to me that is a sign of a good dr which is one that listens . Glad
all your pre op is going well and I know the surgery will go just
aas smoothly . Know I am sending prayers and good vibes your way .
Warm hugs,

Hi Liesl,
How cool! Thats great.The more weCAN inform the better it will be.
I am thrilled about this!
Love
Marge

Dear Gang,
Has anyone tried the Betaine Hydrochloride for fat malabsorption? Has it
helped?
Thanks,
Rosemary.

HiI have had great telief of this from the antibiotic but I have an
article as well.
Marge
Plenty of Relief ... and Skepticism
Increasing numbers of Crohn's sufferers are benefiting from
antibiotics,
but most scientists say there's not enough evidence to prove bacterial
infection is the culprit.
By THOMAS H. MAUGH II, Times Medical Writer
"I really think it saved my life," Crohn's sufferer Barbara Perkins
says of
an antibiotics regimen.
AP
RELATED STORY
Milk May Be the Carrier of Crohn's
Nine years ago, Barbara Perkins thought she had stomach cancer. She
developed intestinal bleeding and diarrhea and lost 90 pounds from her
5-foot, 10-inch frame in six weeks.
"I was unable to get out of bed and could barely walk," said the
48-year-old homemaker from El Paso. "I was very, very sick."
Eventually, she was diagnosed with Crohn's disease, an intractable,
debilitating condition that afflicts half a million Americans.
Though most people may be unfamiliar with it, Crohn's disease affects
more people than multiple sclerosis, Duchenne muscular dystrophy and
Huntington's disease combined. Resulting from an immune attack on the
intestines, Crohn's is extremely painful, characterized initially by
abdominal pain and disabling diarrhea, followed by loss of appetite
and
weight, joint pains and fever.
Crohn's is normally treated with drugs that suppress the immune
system,
but those have limited effectiveness. However, a new regimen of
antibiotics--based on the revolutionary idea that Crohn's is caused
by a
bacterial infection--has Perkins and a growing number of others free
of
Crohn's symptoms for the first time in years.
In 1996, Perkins was hospitalized 23 times for kidney infections and
intestinal blockages, among other problems, spending nearly a full
nine
months in confinement.
Then she went to Dr. William Chamberlin of the William Beaumont Army
Medical Center in El Paso, one of a small but increasing number of
physicians who believe that Crohn's is caused by a microorganism
called MAP.
He began her on a cocktail of antibiotics that targeted the bug.
Within 18 months, she was in complete remission, leading the active
life she once thought was impossible. "I really think it saved my
life," she
said.
Perkins is one of perhaps 200 Crohn's sufferers around the world who
have received a new antibiotic treatment that Chamberlin and others
predict
will revolutionize treatment of the disease.
Reports presented at a recent Digestive Diseases Week meeting in San
Diego indicate the antibiotic cocktails have successfully induced
long-term
remissions in as many as two-thirds of those treated. Those
preliminary
studies have been so successful that researchers in Australia and the
United
States are gearing up for much larger trials.
"We've never had a treatment like this before," said Dr. Tom Borody of
the Digestive Diseases Centre in Sydney, Australia. The patients not
only
stop having symptoms, he said, but their intestines heal--an
unprecedented
achievement. "If this were cancer, we would be calling these long
remissions
a cure."
Although the idea that MAP causes Crohn's is still highly
controversial, the success of the treatment is making many critics
take
notice.
The successes are impressive, no matter what the cause of the disease,
said Dennis Lang, a Crohn's expert at the National Institute of
Allergy and
Infectious Diseases in Bethesda, Md. "If I were a Crohn's patient, I
would
bring this information to my doctor," he said. The treatment "seems
to be
helping clinically . . . and that's the important thing."
At the same time, the incidence of Crohn's is increasing, most
researchers believe. Overall numbers are not available--Crohn's does
not
have to be reported--but some regional figures suggest an increase.
The
incidence of Crohn's went up 46% in Olmstead County, Minn., from 1980
to
1991, for example. In Spokane, Wash., it rose 49% between 1971 and
1981.
Every day, an additional 55 people in the United States are diagnosed
with
the disease.
Many people with the illness are unable to leave their homes because
of
the diarrhea; others drive around in recreational vehicles and mobile
homes
to keep a bathroom handy.
Roughly half of Crohn's sufferers require one or more surgeries to
remove affected areas of the bowel, but new problems almost always
recur.
No one knows precisely what causes Crohn's, but MAP (for Mycobacterium
avium subspecies paratuberculosis) has been a suspect for nearly a
century.
The purported link "has been out there for a long time, but the
research to
date is not clear-cut," said Dr. Charles O. Elson III of the
University of
Alabama, medical director of the Crohn's and Colitis Foundation.
"The bottom line is, their case is not proved," he said.
The drugs the researchers are using can kill a broad variety of
bacteria in the gut, added Dr. R. Balfour Sartor of the University of
North
Carolina. "It's very difficult to say that response to these agents
proves
this mycobacterium is involved" in Crohn's, he said.
"Our critics outnumber us 99 to 1," conceded Dr. Ira Shafran of the
University of Central Florida. "But our work shows that you can
identify [a
Crohn's patient with MAP] and put him on a treatment that is safe,
effective
and cheaper than existing therapies and that he will get better."
"We're really in the same position we were a few years ago with
Helicobacter pylori and ulcers," Borody said. Although physicians had
long
believed that ulcers were caused by stress, Australian researchers
demonstrated that 80% of cases were actually produced by H. pylori
infections.
Doctors resisted that idea, even when it became clear that cocktails
of
antibiotics could eradicate ulcers, until Dr. Barry Marshall, then a
physician in Perth, Australia, and now at the University of Virginia,
intentionally swallowed a test tube full of the bacteria and promptly
developed an ulcer.
No one is proposing to swallow a test tube of MAP--Crohn's is much
worse than an ulcer. But Borody and others are hoping that their
treatment
successes and the earlier experience with ulcers will stimulate
gastroenterologists to look at the new findings with an open mind.
MAP Difficult to Grow in a Laboratory
The case against MAP in Crohn's has been difficult to build because it
is an elusive microorganism that is hard to identify in tissue and
even
harder to kill with conventional therapy. It is a close relative of
Mycobacterium tuberculosis, which causes tuberculosis, and more
distantly
related to M. leprae, which causes leprosy. It normally grows very
slowly--dividing only about once every 18 months or so--making it very
difficult to grow in a laboratory and rendering it immune to most
antibiotics.
Scientists originally suspected MAP in 1913 because it causes Johne's
disease in cattle, a disorder whose symptoms are identical to those of
Crohn's in humans. The microorganism produces similar diseases in
many other
animals, including four species of primates.
Early researchers were unable to isolate MAP from human patients and
most came to consider the animal disease a red herring.
Those difficulties should not have been a surprise, Borody said. "We
know without a doubt that M. leprae causes leprosy, but it is almost
impossible to isolate it from patients with the disease. Why should
MAP be
any different?"
But most scientists have demanded that MAP be consistently isolated
from Crohn's patients before they will even consider it as a potential
cause.
The first step in that direction occurred in 1984, when microbiologist
Roderick J. Chiodini, then at the University of Connecticut,
successfully
isolated MAP from the intestines of 11 people with Crohn's, a
difficult
process that took as long as 18 months for each specimen. Although
other
labs were eventually able to reproduce his findings, critics argued
that
identifying the bug in a handful of patients was a far cry from
showing that
the bug caused the disease.
More recently, microbiologist Saleh Naser of the University of Central
Florida developed a technique in which MAP from patients' tissue can
be
grown and identified in the laboratory in as little as 10 weeks. He
has
found the microorganism in 83% of intestinal specimens from Crohn's
patients. He even reported last year that he found it in the breast
milk of
two mothers with Crohn's, but not in milk from five healthy mothers.
More solid evidence has been provided by molecular biologists who have
been able to identify DNA from MAP in Crohn's tissues. In 1991, for
example,
Dr. John Hermon-Taylor of St. George's Hospital Medical School in
London
identified a unique genetic sequence in MAP called IS900 and began
looking
for it in patients.
He found IS900 in 65% of bowel samples from Crohn's patients, but in
only 4.3% of those with ulcerative colitis--a related condition that
affects
only the large intestine--and 12.5% of healthy people. The fact that
MAP is
present in a majority of Crohn's patients, but in few of those with a
related bowel disease, strongly suggests that it is a causative
agent, he
said.
More recently, researchers have found evidence of an immune response
to
MAP in Crohn's patients, further strengthening the evidence of its
role in
the disease.
Last year, Naser and Dr. Fouad El-Zaatari of the Baylor College of
Medicine in Houston independently identified antibodies directed
against two
proteins unique to MAP, called p35 and p36.
They found that antibodies against either p35 or p36 were present in
92% of 63 Crohn's patients, but in only 8% of patients with ulcerative
colitis and 25% of healthy people.
Finally, Dr. Jonathan Braun of UCLA has identified antibodies against
a
mycobacterial protein called HubP in nine of 10 Crohn's patients he
has
studied.
"We're not saying that MAP is responsible for all cases of Crohn's,"
said Hermon-Taylor. "It's a question of: Does it cause 50% or 90%?' My
hunch, based on the evidence that is available, is that it causes as
much as
90%."
Even before this new evidence linking MAP to Crohn's came out, a few
clinicians had begun treating Crohn's victims with a cocktail of
antibiotics
directed against the mycobacterium.
Hermon-Taylor studied 52 patients with Crohn's that had proved
resistant to all other forms of therapy and began giving them a
combination
of the antibiotics rifabutin and either clarithromycin or
azithromycin. He
reported in 1997 that six of the patients could not tolerate the
drugs, but
two-thirds of the rest were in remission at the end of two years.
Some of those suffered relapses after the treatment was stopped, but
restarting therapy pushed them back into remission.
Shafran enrolled 42 Crohn's patients who showed antibodies to p35 or
p36 in a treatment program in which they were given a similar
combination of
drugs. He reported last month at the Digestive Diseases Week meeting
in San
Diego that 26 of the patients went into remission and were able to
stop
taking all other Crohn's drugs. Eight were unable to tolerate the
therapy,
four showed partial improvement and only four showed no benefit.
Borody reported at the same meeting on his studies of 12 patients who
had failed all previous attempts at therapy. After as long as four
years,
six of them were in complete remission, including healing of their
intestines, three were in remission but still showed signs of
inflammation
in their intestines and three did not respond to the drugs.
One of Borody's successes is Greg Portelli, a 28-year-old accountant
in
Sydney who was diagnosed with Crohn's at 16. He suffered
gastrointestinal
bleeding, weight loss, diarrhea and intense pain, as well as hair
loss and
allergies caused by the steroids used in his treatment. Hospitalized
frequently, he struggled to get through his university courses. "I
got so
thin I could wear my girlfriend's jeans," he said.
Three years ago, doctors wanted to perform surgery, but Portelli
decided to visit Borody, whose work he had read about. "My family
doctor and
the surgeon said, 'Don't [adopt Borody's regimen],' but I was at my
final
tether," he said.
Within a month, he stopped passing blood, could eat normal foods and
began to keep weight on. He is still taking the drugs, but his
intestines
have healed. "To say it changed my life is a complete understatement."
Other physicians consider these results "anecdotal"--and rightly so,
because they were not obtained in controlled trials. But that
situation is
already changing. Borody has organized a clinical trial on more than
200
patients that is now underway in Australia. Dr. David Graham of the
Baylor
College of Medicine is organizing one in this country that will be
conducted
under the auspices of the Department of Veterans Affairs.
"I've worked nonstop for three years," Shafran said. "I gave up my
private practice to immerse myself in the field. These results have
attracted Crohn's patients from all over the country, and I have 85
patients
currently on treatment. But I underwrote the entire project myself.
If I
don't get some funding soon, this is going to bankrupt me."
Further information is available at http://www.crohns.org,
http://paratuberculosis.org and http://www.ccfa.org.

recent scientific evidence that proved minocin worked on Crohns
disease as well . Im not 100% sure but I believe crohns and IBS might
be the same thing if not there might be a slight difference. Thanks
for the reminder to us all :) hugs,

Hi Lisa ,

Your post and the support is exactly the type of support that kept me on AP . I'm so delighted you shared your story with Jim and I even more delighted that you are doing so well . Biking is awesome . I'm playing soccer again and jogging this mino is amazing . All my labs are normal or near normal . My last ANA was 1/120 and it was 1/2560 BIG difference . Thanks for posting hugs,

socjog

PS I don't o those sports well but I'm doing them LOL

On Monday - just for her 18month check up. She is fabulous... the doc we saw was my old primary (we switched to a new guy this past year - same practice)... I was telling her how leery I am of vaccinations due to my DM - and she asked how my DM was doing etc. Told her I flared last year (she said that is common and went on and on) and then I told her I used antibiotic therapy - she asked Minocycline or Doxycycline? I said well, I had used Mino in the past but since I was nursing I used Erythromycin... she said only erythromycin? Wow, that's great and it worked for you... Anyway - it was nice to see how receptive she was, and even somewhat knowledgeable regarding AP and DM... I just keep trying to spread info!!

Liesl (Lee) Dutro, Marketing Coordinator

hci

7011 Campus Drive, Suite 200

Colorado Springs, CO 80920

Visit our website at www.hciusa.com

Hi Jim ,

My biggest turn around while on AP came after 2 yrs of a heck of a roller coaster ride . If it wasn't for family and the support of people on AP encouraging me to continue I would have stopped AP . Today almost 6 yrs later I am almost in remission and doing remarkably better.

My advice to you is why not ??? Why give up a treatment that is proven safe and effective . Yes it is painfully slow with ups and downs but the outcome may be decreased symptoms and a healthy body . Toxic drugs may work too but they also harm our body. If and when a cure is found you do want to be able to enjoy it and a healthy body is the key .

I would ask you to review the do's and don'ts make sure your not mixing your antibiotic with other meds milk products calcium's etc. Are you following the 2 hr windows . Are you treating yeast regardless of whether you have a visual symptoms here or not you should prophalactically treat yeast since doing so is so benign . many times yeast effects minocins absorption and we don't even know we are bothered by yeast it can be asymptomatic ( without symptoms) . So I would review the protocol . Also what dose are you on ??? Are you on MWF and is there room to increase the dose ?? Are you on timed released etc. Maybe in there is an answer . If your on full protocol when did you start full protocol because it could be too much for you and this flare is actually a herxhiemer reaction so cutting the dose might help . Having the experience of an AP dr really helps us try and figure out all the answers . Hope this may shed some thought on your symptoms . Also please know we are not
at all alike NONE of us are nor is our response to this therapy . Many have had long herx reactions or flares and many have short ones but do keep in mind our varying symptoms are just as different and hence the many different reactions to this therapy . Its a protocol that I think has play in it for each of us until we get to a comfortable dosing . Good luck hang in there ,

socjog

PS One last thought on my worst days even if the dr had said it was time to try a DMARD I wouldn't have stopped my mino . WHY ??? Because even then mino can work and can possible decrease the need for DMARDs and shorten the length of time on them so for me I was never come off mino unless I was in remission for some time :) Just a thought!!!

Hi Debb,

I think that is awesome that your internist allowed you to talk candidly about your AP . By doing so you were able to educate her and to me that is a sign of a good dr which is one that listens . Glad all your pre op is going well and I know the surgery will go just aas smoothly . Know I am sending prayers and good vibes your way . Warm hugs,

socjog

Hi ML ,

Thanks for posting about your IBS I do know that there was a recent scientific evidence that proved minocin worked on Crohns disease as well . Im not 100% sure but I believe crohns and IBS might be the same thing if not there might be a slight difference. Thanks for the reminder to us all :) hugs,

socjog

Hi Suzie , Well known of us her can tell you what is safe for you , only your dr can do that . What we can tell you is that we know of women who get pregnant and can continue to be on antibiotics other then Mino . Minocin can not be taken because it passes through the placenta and can damage your unborn Childs teeth by grossly discoloring them . I believe someone just posted an article about erythromycin being OK for nursing mothers so talk to your dr about trying this drug and the safety record during pregnancy . Good luck warm regards,

socjog

Hi All ,

Well this may not be a well received personal opinion I have that I will share with you in regard to mercury . Its just an opposing view but it may shed some light on some ideas here so bare with me .

First off you can have a mercury blood level done to see if in fact ones body has to much exposure to mercury . Its a cheap blood test and not invasive to have done ( one needle stick) . I am NOT an avid believer that mercury fillings have any effect on our body and or auto immune disease . There is no scientific credible evidence to support a relationship between mercury filings an our symptoms . There IS a lot of testimonial evidence only . For us to remove all our fillings is A) dangerous because now you ATRE releasing all that mercury into the blood stream and this could cause problems . B) costly C) very invasive as I for one have problems with all my heart valves and having that extensive oral work done in my mouth can pose a potential for greater problems than we already have with our auto immune disease .

This step of one removing ones fillings is a drastic measure looking for an easy solution for ones symptoms that has NOT be proven . I d am of the belief that my auto immune disease is based on bacteria and taking the mino has proved that as I have become healthier . I would truly encourage those thinking of removing all their amalgams / mercury to research this completely . I do encourage all of us to not have any more mercury amalgams put in our mouth as it is a controversial topic neither proved nor disproved . .

Ok enough said that's my lay opinion :) Warm regards,

socjog

Hi Ethel,
This is a great article.I am all for people taking vharge as it is a
sad affair now. More docshave no clue about all that there is out
there.The smart ones welcome whatyou bring them.
Love
Marge

societal trend that will continue to have an impact on the health
care workforce. The flag bearer of this trend is the Internet, which
brings information access and interpersonal communication on an
unprecedented scale to hundreds of millions of persons worldwide.
of September 2001, 143 million Americans, or about 54 percent of the
population, were using the Internet, and new users were adopting the
technology at a rate of more than two million per month.
use into the fabric of society is assured by observations that 90
percent of US children between the ages of five and seventeen now use
computers at home and at school.
percent had sought health information at least once, and more than a
third used the Internet to find health information regularly.
room reading printouts from health-related Web sites in preparation
for presenting them to the doctor has become common in health care
settings, a practice that some practitioners encourage and others
dread.
toward positioning the patient as the final authority for choosing
among diagnostic and treatment alternatives and the health
professional, to a role akin to "tech support" for purposes of
explanation of alternatives and interpretation of medical terms and
concepts.
America" that will usher the postwar baby boomers into their
retirement years will increase the need for health services, both
traditional and novel. This demand should fuel growth of all health
professions, including physicians, nurses, and allied health
professions.
computing technologies and access to information do not appear at
this point to be sufficient to cause the extinction of any current
type of health professional.
be winners and losers, however, and the emergence of new categories
of jobs. As health practitioners serve as advisers and teachers,
their communication and teaching skills will be highly valued by
empowered and knowledgeable consumers; failure to communicate
effectively will be likely to place a health care provider at an
economic disadvantage.
electronic sources are time-consuming tasks, which explains in part
why physicians and other health professionals underuse the
information sources now available to them. More than thirty years ago
a modification of the traditional role of the reference librarian,
called the "clinical librarian," brought an information access
specialist into the hospital wards as part of the medical care team,
to identify questions related to the care of individual patients for
which additional information was needed and to find that information
from printed or online sources.
may not wish to avail themselves of expert help in finding relevant
information, it can be predicted that some of the lay public will.
Personal health advocate and personal health adviser services
targeted at providing tailored education for an individual's unique
combination of health problems and concerns are an obvious commercial
opportunity for an educated populace connected by a global Internet.
provide health care services but would help others to understand
their medical conditions and also negotiate the complexities of
selecting and using appropriate health care services, could
eventually have their own basis for credentialing and licensure if
viewed by state medical boards as a form of medical practice.
of medical knowledge and its implications for medical decision making
is the retraining of the existing health care workforce. In most
practice settings, licensed health professionals can simply avoid
information technologies if they so choose.
do not use online sources to get up-to-date information are
practicing within a professional standard of care that will need to
change as the complexity of clinical decision making escalates. In
the coming era of "personal genomics," where one's own DNA sequence
is used to select the correct drug from among hundreds of
alternatives, computers will be essential intellectual amplifiers for
health professionals.
delivered with health outcomes, an utterly obvious step for
continuous quality improvement that is largely missing from today's
health care environment, other than in research studies, requires the
use of standardized electronic medical records. And effective
electronic medical records require the direct participation of health
care providers in their creation, maintenance, and interpretation.
computer is a justifiably endangered species in this emerging
environment, but new methods are needed to add competency in
information management and technology use for mid-career
professionals.
includes knowledge of the principles of information retrieval,
clinical epidemiology, biostatistics, and how to critically appraise
the published literature. Since the best teachers are role models, an
opportunity will exist for a new specialty within the health care
workforce of technology and information science educators, who are
themselves health professionals with extensive expertise and
experience in the application of these knowledge management tools to
health services delivery.
already licensed health professionals are harbingers of a more
systematic approach to the retraining of mid-career professionals.
ubiquitous availability of computer-based information access and
knowledge management tools will expand the types of jobs in the
health care workforce and provide new business opportunities for
support industries.
appears to face extinction, but pressure will mount to abandon the
current model of autonomous practitioners depending upon their
personal memory and experience to deliver optimal care.
information available via the Internet will lead to continued growth
of nontraditional and alternative health products and services and to
a remodeling of the relationship between providers and patients.
other human endeavors, knowledge is power, and the redistribution of
access to knowledge will mean an inevitable redistribution of power
over the decisions that affect the delivery of health care and the
makeup of the health care workforce.
in medicine. The last paragraph is the main point of the article, and
is in synch with my vision for medicine.
have sought to provide you for over five years in this no-cost-to-you
format. All of my past newsletters are provided to you at no charge
so we can begin to seed the soil for the massive health care
transformation.
million citations and is growing at the rate of more than 400,000 new
entries per year. A wry observation about this volume is that a
conscientious practitioner who reads two articles each evening will,
at the end of a year, be approximately 550 years behind in keeping up
with the literature.
that even if only 1 percent of the new literature is relevant to
health care delivery, that same provider is potentially five years
behind the current state of knowledge."
is absolutely impossible for any single human to know all that is
possible to address a problem. That is where the absolute beauty and
enormous potential power of the Internet and brainstorming comes to
play. The technology is finally here to pull this off.
program we have been working on for several years that is called
Knowledge Filter. The program will allow us to capture the collective
wisdom of tens of thousands of some of the brightest minds on the
planet in natural medicine and then share that knowledge with you.
information you need to avoid resorting to the traditional medical
paradigm to solve your health concerns.
have found on the new site to solve your problem the second phase of
my mission is to help you identify the absolute best and brightest
health care professionals that are in your hometown to help you
recapture your health.
follow the suggestions to recapture your health on this site, most
all of you will live long enough to see the traditional paradigm
transformed.
that has Medline, is currently the number one health site in the
world and my site is currently number 8. After the software is
introduced, we aim to add to the site more articles and traffic than
the National Library of Medicine. People from all over the world will
be using this tool to answer their health questions and accelerate
their own personal and family's journey away from disease and towards
health.
Reserved. This content may be copied in full, with copyright;
contact; creation; and information intact, without specific
permission, when used only in a not-for-profit format. If any other
use is desired, permission in writing from Dr. Mercola is required.
Dr. Mercola. They are not intended to replace a one-on-one
relationship with a qualified health care professional and they are
not intended as medical advice. They are intended as a sharing of
knowledge and information from the research and experience of Dr.
Mercola and his community. Dr. Mercola encourages you to make your
own health care decisions based upon your research and in partnership
with a qualified health care professional.

Hi Ibby,
I did have home health caredo it and yes it was easy.
They teach you everything you need to know.I do know that this is all
my insurnace would cover.
I was in a severe flare as I had taken my bedridded dying mom home
with me and care for her around the clock for the last 10 days of her
life.
I wa a mess and those Ivs pulled me out nicely!
If I can help
Let me know
Love

-Hi
I as well had very bad bouts with vasculitis..temporal lobe pains in
my head..horrible and had migraines to boot. All left with the AP.
Love
Marge

Mercola.com

[LINK]

Dr. Joseph Mercola

All Health, No Hype

FREE Weekly Health Newsletter

Your Email Address:

Welcome Jodi and Happy Anniversary! Ain't AP great?
Regards,
Dee

Hi Jodi, So glad you joined us in our new home. Everyone has been
wonderful in welcoming us.
Happy Anniversay, Jodi! Many, many more.
Jodi your story should be submitted to this sight. I do remember
many of your tough times, but you are a fighter.
Kiss those beautiful children..I do remember seeing them on your
personal site.
I am so happy you are here. You have so much to offer.
Love, Barb

for 1 year!

I don't know about AP for vasculitis, but I have not had anymore bouts with
it since starting AP. I was on prednisone when I started it, so I can't
really say that I know for sure.
Jodi Fadness, CD (DONA)

I finally made it here! I am an ex-RBF'er. I am finding that I definitely
need to keep in touch with folks that are doing this protocol! And I miss
*the crew* from over there and can't wait to make some new pals here! I
hope there's room for one more!
I am a 32 year old mother of 3 - ages 6yrs, 3.5yrs and 22mos. My husband
and I have been married for 9 years (today!) and despite some quirks about
each other that we can't stand, we're more in love than ever! (hehe - how's
that for playing it safe?! LOL!) No really, the man has put up with alot
from me, especially since our youngest was born.
My story starts about 7yrs ago. I was just pregnant with my oldest and
started having what I've found now to be Paleandromic Arthritis (sp?). I
had pain that moved all over my body and would literally immobilize me. I
was in nursing school at the time and there were days that I came with a
mini tape recorder and a ton of blank tapes cuz there was no way I could
write notes all day. I went to the ER cuz I couldn't walk on my foot. Of
course, they could find nothing wrong and sent me home with some
prescription strength naproxen. I knew these pains weren't in my head, and
no one would listen to me.
As the pregnancy progressed the pains went away when I was about 4 months
along. Whew! I thought I was over it! Not so. About 2 months postpartum
they started coming back and I dropped my daughter. It was then that I
sought a wonderful rheumatologist. My labs showed nothing but a high sed
rate and a borderline rheumatoid factor. The pain was controlled with
NSAID's and within 6 months the pains went away. I went a long time before
having any trouble again. I'd have it off and on but not enough to
incapacitate me. This went on up until just before I got pregnant with my
youngest, Lars.
My dear rheumy had just died from a failed liver transplant and this was
his *replacement* in the practice. Nice guy, can't be any older than I am.
He did xrays and tests and told me that definitely have rheumatoid
arthritis. I had 2 choices - I could start treating this and prevent
ruining my joints, or I could go on to have more children and risk it.
Well, the Lord spoke for me and even tho my husband and I were not trying
(we've always had fertility problems!) I found myself pregnant 3 weeks
later! What a gift!!!
My pregnancy with him was fantastic. Oh how I love being pregnant! I'm a
birth doula so I come by it kind of naturally :) When I was 32 weeks (8
months) pregnant I came down with a sudden bout of aggressive pneumonia
(came on and was full blown in less than 24 hours!) I had a high temp,
couldn't eat cuz I'd yak it up, was hot then cold, and an xray showed I had
crap in my lungs. My family doctor took one look at me and admitted me into
the hospital for 5 days. My family doctor is the one who is now
administering my AP and is fascinated in the results he's seen with myself
and others.
After I had my son in November 2000, all hell broke loose. I am adamant
about breastfeeding and it was going so well, other than Lars was colicky
as all get-out! But I remember the evening of his Baptism in January (he
was about 7wks old) my feet hurt and that pain never went away. Gradually
it started to include every joint in my body. Nothing I took helped with
the pain. So I went to see my family doctor 3 months postpartum and he drew
a bunch of labs. What a mess they were! He called my rheumy and got an
appointment with me the very next day. Rheumy said yep, I've got full blown
arthritis. He recommended I stop breastfeeding and go on methotrexate
immediately. I couldn't do it. As much as the pain was killing me, I
couldn't do it.
The course of another 3 months went on and I was also diagnosed with
Sjogrens via Schirmers Test and no saliva in my mouth. They kept drawing
labs and could not figure out what my body was doing. All they knew is my
rheumatoid factor was in the 80's, my sed rate was in the 50's and my ASO
Titer was 873. Plus some IgG and IgA levels and just a whole ball of wax.
My doctors were stumped, and my family practitioner admitted to me that he
was scared - nothing more sobering when your doctor tells you that! I
started noticing some bruising in my feet - like deep tissue bruising.
Doctors ran more tests because now they were worried about lymphoma,
leukemia, lyme, lupus - all the *L* illnesses (ha!) I still kept
breastfeeding thru all of this - it was the only thing I DID have control
over and it was the only thing that was going right with my body.
My husband and I then got really freaked out. None of the serious tests
came back positive, and I truly felt like I was dying. I really did. I was
sleeping in the recliner at nite and just writhed with pain. I prayed for
the Lord every nite to just take me in my sleep because knowing I'd wake up
in the morning with the same pain was unbearable to me. Because I was
nursing Lars, he laid on my tummy thru the nite. My husband trucks and I
will never forget him having to leave on Sunday nite and be gone all week.
I'd set up *camp* in the living room and my poor kids, who should have had
mommy taking care of THEM - not vice versa, had to kind of be my
*caretakers* during the week. I slept in my recliner. My hands were closed
in fists so my oldest helped me change Lars. Going to the grocery store was
all I could do, but we needed food. One morning when Alan was home I needed
to go to the bathroom and it took me 1/2 hour just to get out of bed. I was
holding onto walls and furniture trying to get to the toilet that was no
more than 15 feet away - I couldn't make it in time, I wet myself in the
hallway. I couldn't wipe my own bottom anymore. I couldn't brush my teeth.
I couldn't enjoy holding my baby - positioning him to nurse was excruciating.
We decided we'd go to Mayo Clinic in Rochester. A 4 hour drive. I brought
Lars along cuz I was still nursing him (6 months). When we got there the
doctors could find nothing beyond what my original doctors found, and
pieced it all to be Rheumatoid Arthrits. Heck, when I look in the
transcripts I see that the doc (head of rheumatology, how sad) said I had
moderate pain - MODERATE PAIN?! Had I known this is what he wrote I'd have
found the strength to kick him! Moderate pain was what necessitated the
doctor and my husband having to help me even step up to sit on the exam
table?! JERK! I was given prednisone and instructed to work with my rheumy
at home to start methotrexate immediately.
Well I went home on the prednisone, but still refused to do the
methotrexate. It was just 10mg of prednisone, but I could already start to
feel improvements 3-4 hours after I took the first pill.
This trip to Rochester was traumatic in another way. We stayed in a hotel
the nite before and I last nursed my son at 5:30am the next morning. I
couldn't sleep cuz the hospital bed sucked. I was bawling in pain. My
husband helped get me into the recliner so I could nurse (we co-slept with
him) and I decided then that that would be the last time I nurse him. It
had to be. I figured I'd be put on some high-test meds, but I also decided
maybe it was time to give my body a chance to get well without the demands
of nourishing another human being. I was in the chair at 3:30am and I
bawled for 2 hours as I nursed him for the last time. I wanted to cherish
and remember every satisfied grunt, every noisy gulp, every breastfed burp,
his gentle little breath on my breast, the way he looked at me - all of it.
And I have remembered it vividly. My stepmother was in the area and we
arranged to have her come and get Lars. I had never been away from my son
in 6 months. I had tried to get him on formula but he hated it - I mean
detested it. He'd rather starve. The only way to do this was cold turkey.
So she took him home with her for a couple days. That was the most awful
feeling - watching her drive away with my son. My husband then helped me
into the shower and I bawled for an hour when I watched perfectly good
breastmilk run down the drain. I still can't help buy cry when I remember
it. This was the only thing that was going right with my body, and I failed
at that too. I prayed and prayed in that shower for the Lord to help Lars
and I thru this detachment. To help Lars to forgive me. As I look back, had
I known about AP, I would have NEVER stopped breastfeeding and would still
be doing it today at 22 months.
And yet I was too proud to accept help from people who wanted to help me.
My church provided meals for us. People offered to come clean and help me
with the kids, but I was ashamed of what my house looked like. And I mean
it was BAD! There was no way I could burden someone else with my problems.
And honestly, I am such a stoic person that I did my best not to let on
just how bad it was. I went scrapbooking at a friends house (a whole group
of us do this) one nite and her husband helped me carry all my stuff in and
back out again when it was time to go. It took me 15 minutes to climb the
flight of stairs to the scrapbooking room. I ended up having to leave early
cuz I was getting sick with pain and my hands weren't working anyway. I
couldn't even enjoy it anymore. The last thing I wanted was a pity party. I
have my dad to thank for that - this is where I got it from. Above
everything else, don't EVER show anyone that everything isn't PERFECT.
About a week after I started showing bruising in my feet and had gone to
Mayo Clinic, I woke up one morning with this
(http://www.geocities.com/truknmomma/spots.html). I immediately went in to
my family practioner and he freaked and got an appointment immediately with
my rheumy. My rheumy saw it and freaked. There were students and he had
them all come in to show them this is what real vasculitis looks like. A
dermatologist came in and did a biopsy, which came back positive for
vasculitis but the immunoflourescent came back negative for
Henoch-Schoenlien Purpura. Come to find out this is a common thing for
those who have Sjogrens. We still don't know why - all bloodwork came back
normal.
My pred was bumped up to 60mg for 3 weeks and might I say that was an
experience! You're dang right I was feeling good! For the first time in
months I was cleaning my house - and it was cleaned within an inch of it's
life! I was only able to sleep 3-4 hours at nite - and the 40lbs I had lost
effortlessly since getting really sick, was put right back on. BUMMER! I
hated the prednisone. It made me feel alot better but the side effects sucked.
When I was on these high doses I stumbled across the RBF site. And a light
went off. I spoke to the wonderful people (who are now here, hello you
sweet people!) and with their knowledge and encouragement I found my way to
Doc Sinnott. I started the rest of my life on September 24, 2001 in Ida
Grove. My mother-in-law watched my children for the week. My mother came
and stayed all week with me in the hotel - we spent precious precious time
together. And bonded like never before. Her staying with me assured my
husband that I was in good hands and he was still able to make a living
that week knowing that all was ok.
We were scared about the expense. But you know what? The good Lord had it
all taken care of. Once my test came back positive for Mycoplasma
Fermentans, the insurance paid all but $250 of it. We'd pay it all if we
had to, but this was nice. I came home feeling better - tired, but alot
better. And so happy to see my family again. I weaned off the prednisone on
December 5th, having been on it only 6 months. In January 2002 I did
another IV booster series and have not needed one since! I started Zoloft
with this series and my family practitioner supplied me with samples - I
never had to pay a dime for it. I have also weaned off that about 2 months
ago. Right now I am on supplements from my chiropractor (who has also been
a kingpin with my recovery), minocycline and erythrocin. Oh and Advair for
a recent asthma situation - just need it to freeze hard in Minnesota to get
rid of ragweed!
I am so thankful for this therapy and the folks that have helped me along
with it. I know it has saved my life. I couldn't have gone on last year the
way I was going. Starting methotrexate would have devastated me. Staying on
prednisone would have devastated me. And I'm still devastated enough by not
nursing my son (I'm an attachment parenter/cloth diaperer/birth junkie)
I am doing everything I did before I got sick. I'm cleaning my whole house
(whether I like it or not! LOL!) I'm getting down on the floor and playing
with my kids. I'm mowing my lawn. I'm able to drive without fear of not
being able to react because of severe pain. I'm playing my flute. I'm
brusing my teeth with a regular toothbrush, not one that spins in circles.
I'm pulling my kids in their wagon. I'm pushing them on their swing. I'm
walking on my treadmill. I'm a wife to my husband again. I'm cooking meals.
I'm enjoying every sunrise and every sunset. I'm painting my kitchen. I've
even started back with some doula clients and have finally finished my
certification!!!! Not to say I dont' flare from time to time, I do. And the
fatique can get me if I'm not careful. BUT I HAVE MY LIFE BACK! AND I'M SO
HAPPY!
Today is our 9th Anniversary. Last year was definitely a true test of *in
sickness and in health* - then again I tell my husband it's also been a
real test in *for richer or for poorer* - LOL! Our marriage really was put
to the test last year. I was not a pleasant person to be around. Coming
home time after time to what I was like emotionally and physically - let's
just say that I don't know alot of men that could have put up with it in
all honesty.
I also gave my life to the Lord this past March. I attended an event called
Crucillo. This was a spiritual renewal event. I have now realized that I
went thru what I HAD to go thru, to realize what Christ went thru for me.
And the Lord did answer my prayer - I honestly feel that He did not take my
life last year because I am sposed to be helping and witnessing to other
people. I've given my testimony twice now - and each time it has been
different and I've not remembered what I've said until much later. I have
many things that happen to my body when I meditate and pray - one constant
thing being numb tingly hands with pain shooting thru my fingers - others
have felt this and commented on it, without them knowing this is what I
experience.
I could go on and on, and think I've gone on enough. This is mega-long, but
I wanted to give full introduction. Uh, think I have accomplished that?!
LOL! I am so grateful for those that pointed me in the right direction -
you know who you are :)
I will close this now and return to my day enjoying my kids, enjoying the
fact that I am able to straighten up my house and do my own laundry. And
enjoy the fact that I am married to a most wonderful man who allows Christ
to be the center of our marriage :) Not to mention good friends both online
and in person who adore me as much as I adore them. And I enjoy the fact
that now it's time for me to give back to others and I am able to do that :)
God bless each person on this list. I hope you're as happy to have me here
as I am incredibly happy to be here :)
Jodi Fadness, CD (DONA)
SAHM to Ashlea (6yrs), Katelyn (3.5yrs), Lars (22mos)
Minnesota Doula
RA (7yrs), SJS (1.5yrs) - being saved by the grace of God and AP for 1 year!

Hi Jim, I am so sorry to hear about your discomfort. It is very common for AP to be slow (too slow for the person who is feeling the pain)... normally 6 months is even too soon to know - I think most say to measure after 1 yr on AP. Do you feel your dose is enough? Too much? Do you use IV or another antibiotic - flagyl or zithromax.... I know some use 2 antibiotics in their treatment. Have you tried the peroxide baths? Perhaps the toxins dying off are causing herx symptoms.

I'm sorry - seems like I raise more questions than answer yours. I know I have read others with PA who have had success (check the rheumatic.org site) and for me it has worked twice for my DM... I have no symptoms and feel fabulous.

Good luck to you Jim... please stick with it.

Liesl - Colorado Springs

DM - 1996

AP minocycline 11/98 - 2/00

AP erythromycin 5/01 - present (M/F 1x)

Liesl (Lee) Dutro, Marketing Coordinator

hci

7011 Campus Drive, Suite 200

Colorado Springs, CO 80920

Visit our website at www.hciusa.com

Hi Liz G ,

Nice to see you again and doing well . I hope for the sciatic your doing stretching exercises and heat works great to ease some of that discomfort . Sorry your struggling with that right now.

Thanks for your warm welcome . It is so nice to see so many familiar faces again sure does make one feel right at home . Thanks warm hugs,

socjog

Hi Ray ,

Well if your dr is NOT receptive to natural remedies he may be stuck in old world medicine but many can have there eyes opened by us being educated and sharing info with the dr . I found for me going in with an almost demanding attitude and tons of printed info which you can send to your dr ahead of time with a little note " please read before visit I want to discuss this with you " might help . My one reason for starting AP was I asked the dr to give me one reason why not to start and they couldn't. Its benign and if needed can be done with conventional therapy drugs , no lose scenario . For me AP ( on mino over 5 yrs now) was the right choice I made and I avoided those potentially harmful conventional therapy choices . Heck if AP doesn't work those choices will still be there but it is always wiser to approach every benign effective treatment first . Good luck warm hugs,

socjog

Any info on using AP for Vasculitis?

Liesl (Lee) Dutro, Marketing Coordinator

hci

7011 Campus Drive, Suite 200

Colorado Springs, CO 80920

Visit our website at www.hciusa.com

Ray,
You made an excellent choice when you decided to give AP a try. I'm
grateful everday for stumbling upon Henry's book and this group. I have
never used other drugs as I found this treatment early on. After a little
more than 1 1/2 years I can honestly say things are under control. Hang in
there!
Dee

Don't you