Diseases and conditions

Rachel
Thanks for your email and forwarding Chris'. This site is defintely
a good place to be for encouragement. It can get confusing out there
in medicine world especially when you are dealing with professional
Doctors who cannot agree among themselves. It is nice to hear about
other's journeys. And very thankful for those of you who are more
pioneers. That had to take guts. But I know how it can be (a little
at least) when your back is against the wall of toxic drugs and that
seems like the only way to go. And you know in your heart that there
has to be a better way.
I believe God designed the body to heal itself and it just does not
make a lot of sense that the body would turn on itself for no good
reason. And to attack the immune system with toxic drugs just does
not makes a lot of sense either. I guess I'm willing to do that if
that is all there is, but it just goes against the grain - and that
is not all there is. So thankful that a friend kept harping on me to
check this out - and for all of you that keep encouraging us on. I
haven't even started AP yet and have already told others about it at
work. Just hate to see others suffer when there are answers out
there.
Keep the encouraging words coming. Some of us are more in the
background on these sites but that does not mean that we do not get
a lot of help from them. You really never know just how many people
you all have helped, and how much you have helped them. I'm sure
there are a lot of lives saved by these sites.
Rambling Ray - just diagnosed with PA but a sufferer for almost two
years.

Hi Rachael,
You'll find a list of studies done at rheumatic.org/studies.htm, which
may help you.
Chris.

I stopped working 1 year(worked 10 years with RA) ago and since have been dealing with a vast # of symptoms due to hypothyroidism (not to exclude severe RA, of course). I am now close to an optimal level of desiccated Thyroid supplementation (waiting for labs). Am also on Cortef 20 mgs per day for adrenal exhaustion.

If my day is low-key, eg, going for walk, some cleaning, cooking and resting/reading at regular intervals, I am better than if I attempt a busy day.

Yesterday was busy. I awoke at this am at 0500 with my teeth chattering (under my duvet), tacchycardia and in extreme pain. I took an extra 10 mg Cortef (based on chattering/pain) and definitely warmed up. I pushed to be ready to leave on a weekend trip with friends by 0800. An hour into the trip, I had to request a return trip to home as was very anxious, nauseated and higher level of pain than usual. Big guilt.

I do not like this version of me...I am used to being busy/active. I feel fragile and unable to cope.

I took my 4^th dose of Minocin on Tuesday. Is the above connected to Minocin reaction? I sure would appreciate help in sorting this out. Is anyone hypothyroid/adrenal that can relate?

Thank you, Robyn

Interesting(maybe)

Hi Susan, So pleased to hear you are feeling a bit better and that
you found the advise you've received helpful. Hope things continue to
improve dramatically for you.
Hugs, Maree.

Ann...I used all three of those meds without any problem. As long as you do the monthly blood tests you should not have any problem. Also at that time I was not told to take any acidopolis which I do now take regularly. Never had any problem even though I was not on it.
I believe your doc is the same as mine. Have another friend on it with him...all three of the meds. She has had RA for 22 years and is (after only five months) close to remission. Soon she can be off everything except Mon-Wed-Fri minocin. I guess how comfortable you are with it depends upon the faith you have in the doc....and how desperate you are to get better. I told him as long as he promised to do nothing that would cause irreversable damage.....I was all for it. Worked well for me...remission in just over five months. Martha in Nashville

Click here: vitacost.com - Newsletter
http://www.vitacost.com/newsletter/html110102_static.html

Hi Anne,
Well, I foundthis. The copmbo you are taking is pitent but has doen
th job for others.
I did it similarly but not at the same time as I had to access
different docs.
I do believe some forof treating yeast is necessary. We develop yeast
becaused if a high carb diet( breads, and anythng made with flour
along with sweets) takin estrogen or birthcontrol pills, prednisone,
and also other dmards whuch will weaken the imune system leaving it
open for yeast to develeop. I know I took a lot of antibnitoics in my
life and NO acidophilus and I should have so yeast was huge issue
and is with many of us. It can be in the gut as it usually isfirts
and then it shows vaginally.
Does not have to.
I have taken diflucan but I think sporonox does a better job.I am
trying now that i am cleaned up to do things more nauturally but
there was too much to do .
The main thing is that you keep your cblood monitiored 1x amonth.I
know I took milk thistle while on all of it as it helps the liver
from overloading.
Email me if I can help
Love
Marge

This came from PC World in today's e-mail. Those of you who copy
information from Web sites, etc., and find yourselves doing a lot of rather
tedious work to make it legible for others may find it helpful... according
to the article. I have no personal experience with it.
== START
Clip Strip
Clip Strip is a Windows utility that allows you to convert the contents of
the Windows clipboard into plain text. All formatting--such as bold,
italics, and underlining--as well as any images or other graphical data is
removed. Clip Strip is useful when you want to copy information from a Web
site and paste it into an e-mail message or into a new word processing or
HTML document: You don't have to manually remove the original formatting.
Version: 1.5.1
Price: Free demo
(You may) Download Clip Strip now at:
http://www.pcworld.com/downloads/file_description/0,fid,21800,tk,hsx,00.asp
== END
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.

Ray,
You wrote:
"...he said I do not have RA and that antibiotics would not work for what I have."
I had gone to Iowa for IVs in April 2001 and met a lady with Psoriatic Arthritis who was also in for IVs. She had been on the antibiotic protocol for about 1-1/2 yrs and was tremendously better. She said when she had first started AP she was bedridden. When I met her, she was walking around. If AP could work for her, why not you? That's what I keep telling myself when I get depressed or progress seems too slow - If it worked for Pat Ganger and Catherine Loftus (they're in Henry Scammel's book), why not me? If you are in doubt, I know the Iowa doctor does take patient calls. You could call him with your questions. He is a wonderful doctor. Keep looking for an AP Dr. Even if you have to travel (I went to Iowa from Ohio), it will be worth it to see an experienced AP doctor and begin the road to recovery. Good luck.
Rachel - SD 2+ Yrs; AP 1 1/2 Yrs

Thanks for the info Catherine. We who are postmenopausal as well as
having a pred history are always looking for better wayss to treat
this.
Love
Marge

Hi Everyone,

Just wanted to say thanks so much for all the good suggestions sent my way regarding this yeast issue. I tried to email everyone individually who sent me some info. so I hope I didn't miss anyone.

I've actually been feeling a bit better - today's the third day of a little less pain and so forth. Sooo, while I don't want to be too gung-ho about it, it's a welcome sign that good days are indeed ahead.

Wishing everyone a great day!

Susan

Anne,
These dosages sound way too high, certainly for the long term. Side effects
may set in. I don't think that you should be taking more than 100 to 200 mg
per day of these powerful drugs in combination. I recommend that you spend
some time researching dosages.
Sincerely, Harald

Harald and all,
This book sounds interesting. Here is the protocol I am following (prescri=
bed by Dr. S. in GA):
100 mg. Minocin twice daily (7 days/week)
500 mg. Metronidazole daily
200 mg. Nizoral daily
Anne
--- In rheumatic@y..., "Harald Weiss, Technical Marketing Group" <hw@t...

Hi:
Here are 2 articles for you to read reagrding the Ipriflavone studies.
Ipriflavone in the Treatment of Postmenopausal Osteoporosis
A Randomized Controlled Trial
Peter Alexandersen, MD; Anne Toussaint, MD; Claus Christiansen, MD,
PhD; Jean-Pierre Devogelaer, MD, PhD; Christian Roux, MD, PhD;
Jacques Fechtenbaum, MD, PhD; Carlo Gennari, MD, PhD; Jean Yves
Reginster, MD, PhD; for the Ipriflavone Multicenter European Fracture
Study
Context- Data on the efficacy and safety of ipriflavone for
prevention of postmenopausal bone loss are conflicting.
Objectives- To investigate the effect of oral ipriflavone on
prevention of postmenopausal bone loss and to assess the safety
profile of long-term treatment with ipriflavone in postmenopausal
osteoporotic women.
Design and Setting Prospective, randomized, double-blind, placebo-
controlled, 4-year study conducted in 4 centers in Belgium, Denmark,
and Italy from August 1994 to July 1998.
Participants Four hundred seventy-four postmenopausal white women,
aged 45 to 75 years, with bone mineral densities (BMDs) of less than
0.86 g/cm2.
Interventions Patients were randomly assigned to receive
ipriflavone, 200 mg 3 times per day (n = 234), or placebo (n = 240);
all received 500 mg/d of calcium.
Main Outcome Measures Efficacy measures included spine, hip, and
forearm BMD and biochemical markers of bone resorption (urinary
hydroxyproline corrected for creatinine and urinary CrossLaps
[Osteometer Biotech, Herlev, Denmark] corrected for creatinine),
assessed every 6 months. Laboratory safety measures and adverse
events were recorded every 3 months.
Results Based on intent-to-treat analysis, after 36 months of
treatment, the annual percentage change from baseline in BMD of the
lumbar spine for ipriflavone vs placebo (0.1% [95% confidence
interval {CI}, -7.9% to 8.1%] vs 0.8% [95% CI, -9.1% to 10.7%]; P
= .14), or in any of the other sites measured, did not differ
significantly between groups. The response in biochemical markers was
also similar between groups (eg, for hydroxyproline corrected for
creatinine, 20.13 mg/g [95% CI, 18.85-21.41 mg/g] vs 20.67 mg/g [95%
CI, 19.41-21.92 mg/g]; P = .96); urinary CrossLaps corrected for
creatinine, 268 mg/mol (95% CI, 249-288 mg/mol) vs 268 mg/mol (95%
CI, 254-282 mg/mol); P = .81. The number of women with new vertebral
fracture was identical or nearly so in the 2 groups at all time
points. Lymphocyte concentrations decreased significantly (500/µL
(0.5 109/L]) in women treated with ipriflavone. Thirty-one women
(13.2%) in the ipriflavone group developed subclinical
lymphocytopenia, of whom 29 developed it during ipriflavone
treatment. Of these, 15 (52%) of 29 had recovered spontaneously by 1
year and 22 (81%) of 29 by 2 years.
Conclusions - Our data indicate that ipriflavone does not prevent
bone loss or affect biochemical markers of bone metabolism.
Additionally, ipriflavone induces lymphocytopenia in a significant
number of women.
JAMA. 2001;285:1482-1488
Current News Index
News Archives
Ipriflavone Fails to Prevent Bone Loss in Postmenopausal Women
By Donald J. Brown, ND
Healthnotes Newswire (March 22, 2001)According to a clinical trial
published in this week's Journal of the American Medical Association
(JAMA), ipriflavone supplementation failed to prevent bone loss in
postmenopausal women with osteoporosis who took the product for three
years.1 Ipriflavone is a synthetic isoflavone, derived from the soy
compound daidzien.
The trial enrolled 474 women from Belgium, Denmark, and Italy, who
were diagnosed with osteoporosis. Their ages ranged from 45 to 75
years. Once enrolled, each participant was randomly given either 200
mg of ipriflavone or a placebo three times per day. All participants
also took 500 mg of calcium per day during the trial.
At the end of the three-year trial, the researchers determined that
bone loss, measured in the lumbar spine, was the same in both groups.
Not only did ipriflavone fail to slow bone loss, but it also did not
produce a decrease in chemical markers used to measure bone loss.
To compound matters, the researchers report that 29 of the 132 women
(22%) in the ipriflavone group completing the three-year clinical
trial developed a clinically significant drop in lymphocytes. These
cells, which make up approximately nearly one-third of the white
blood cells in the normal adult, are critical components of the
immune system and its ability to respond to viral infections. In some
of these women, a return to normal levels took almost two years after
they had stopped supplementing the ipriflavone.
The researchers conclude that, " the relative benefit-risk ratio of
ipriflavone appears low when compared with the alternative
antiosteoporotic drugs available. Its use in treatment is not
supported by these data."
Ipriflavone was first synthesized in the 1930s and has been primarily
researched in Japan and Europe. The product is sold in the United
States as a dietary supplement, with a typical recommendation of 200
mg three times per day.
The results of this new clinical trial veer dramatically from the
promising results seen in several earlier clinical trials with either
osteoporotic women 2 3 4 5 or those at risk for osteoporosis.6 These
trials have found that 200 mg of ipriflavone three times per day
paired with 8001,000 mg of calcium per day prevented bone loss and,
in some cases, actually increased bone density and reduced vertebral
fractures.
However, none of these trials was greater than two years in length.
As noted by the researchers of the new trial, the women enrolled in
their study were somewhat older than women in earlier trials,
suggesting that ipriflavone may be more likely to work in younger
postmenopausal women with early signs of bone loss.
The red flag in the current trial is the significant drop in
lymphocyte levels measured in almost 22% of the women taking
ipriflavone. Although this finding has been reported in one other
smaller clinical trial,7 it suggests that women choosing to take
ipriflavone should have their lymphocytes measured regularly by their
doctor.
While the results of the current trial do not bode well for the
future of ipriflavone in the treatment of osteoporosis, there
continues to be a need for safe and effective approaches to the
prevention and treatment of osteoporosis. Despite the endorsement of
the authors of this study for drugs to treat and prevent
osteoporosis, the fact remains that most of these have very
unpleasant side effects that negatively affect the quality of life of
the many women taking them.8 9 10 11
References
1. Alexandersen P, Toussaint A, Christiansen C, et al. Ipriflavone in
the treatment of postmenopausal osteoporosis. JAMA 2001;285:14828.
2. Agnusdei D, Bufalino L. Efficacy of ipriflavone in established
osteoporosis and long-term safety. Calcif Tissue Int 1997;61:237.
3. Passeri M, Biondi M, Costi D, et al. Effects of 2-year therapy
with ipriflavone in elderly women with established osteoporosis. Ital
J Mineral Electrolyte Metabol 1995;9:13744.
4. Kovacs AB. Efficacy of ipriflavone in the prevention and treatment
of postmenopausal osteoporosis. Agents Actions 1994;41:867.
5. Adami S, Bufalino L, Cervetti R, et al. Ipriflavone prevents
radial bone loss in postmenopausal women with low bone mass over 2
years. Osteoporos Int 1997;7:11925.
6. Gennari C, Agnusdei D, Crepaldi G, et al. Effect of ipriflavonea
synthetic derivative of natural isoflavoneson bone mass loss in the
early years after menopause. Menopause 1998;5:915.
7. Agnusdei D, Bufalino L. Efficacy of ipriflavone in established
osteoporosis and long-term safety. Calcif Tissue Int 1997;61:237.
8. Coakley G, Isenberg DA. Toxic epidermal necrolysis, pancytopenia
and adult respiratory syndrome. Br J Rheumatol 1995;34:798 [letter].
9. Rolla G, Bucca C, Brussino L. Bisphosphonate-induced
bronchoconstriction in aspirin-sensitive asthma. Lancet 1994;343:426
7.
10. Bauer DC, Black D, Ensrud K , et al. Upper gastrointestinal tract
safety profile of alendronate: The Fracture Intervention Trial. Arch
Intern Med 2000;160:51725.
11. Lanza FL, Hunt RH, Thomson AB, et al. Endoscopic comparison of
esophageal and gastroduodenal effects of risedronate and alendronate
in postmenopausal women. Gastroenterology 2000;119:6318.
Catherine

Dear Anne and Group,
An updated version of the anti-fungal reference book "Rheumatoid Diseases
Cured At Last" (©1982, 1983, 1984) is now available at
http://www.arthritistrust.org/resources/book.php?bookid=at003
Sincerely, Harald

Dear Anne and Group,
While I do no have personal experience with anti-fungal medications, I
believe that the combination anti-mycoplasma and anti-fungal medications
may indeed be superior for the treatment of RA than either medication
separately. This is because the two medications attack different pathogens,
both of which can cause RA. Pasted in below is most of the body of one my
emails dated July 9, 2001. Anne, please share with us the protocol that you
are on.
"Dear group,
While surfing the web trying to learn the meaning of "Rheumatoid Arthritis
Factor," I stumbled across the website http://www.arthritistrust.org of the
Arthritis Trust of America, formerly known as "The Roger Wyburn-Mason and
Jack M. Blount Foundation for Eradication of Rheumatoid Disease" and also
as "The Rheumatoid Disease Foundation."
The Arthritis Trust of America appears to be similar to The Road Back
Foundation in mission and outlook. Its prophet is not Thomas McPherson
Brown, MD (1906-1989), but there are two prophets: Roger Wyburn-Mason, MD
(1911-1983) and Jack M. Blount, MD. Like Brown, both point their fingers at
evil microorganisms as the root cause of rheumatoid disease.
Their reference book is "Rheumatoid Diseases Cured At Last" (©1982, 1983,
1984) was posted in its entirety on the Arthritis Trust website one year
ago, but I could not find it this time. I skimmed the book, which appears
to be similar in many respects to "The New Arthritis Breakthrough" by Henry
Scammel. Micoplasmas are not viewed as the root cause of RA and related
rheumatoid diseases, but amoebae or protozoa are. These can be treated with
antiamoebic medicines whose names end in "azole" (such as Metronidazole) as
well as other medicines. Details of the protocol are contained in the book,
and Dr. Blount claims to have cured 16,000 RA patients. If the treatment is
too aggressive, a Jarisch-Herxheimer reaction sets in, as for minocycline.
Déjà vu all over again.
"The Rheumatoid Disease Foundation, now The Arthritis Fund, recommends that
you take this book and its described treatment to your family physician.
He/she will be given every cooperation, without charge, to help you get
well. If your family physician is unwilling to learn this treatment, then
we suggest that you search your city for a physician who is open-minded.
After all, it is your file - not the physician's - and you have a right to
the treatment of your choice." The Foundation website provides a list of
doctors.
Some other samples of text:
"According to Professor Roger Wyburn-Mason's work, there are certain
protozoa that are called Limax (Limax amoeba: meaning slug-like amoeba)
that are found in virtually all human and animal tissue from birth onward.
Similar to the ever-present bacteria, these Limax amoebae may be pathogenic
and may affect different parts of the human body in different ways,
depending upon their species, your genetic heritage, and upon which systems
or organs they invade. Their hostile invasions are apparently triggered off
within the body in the same manner and for the same reasons that
multiplication of hostile bacteria begins."
"If the protozoal theory is correct, when we seek to cut down inflammation
and pain in rheumatoid arthritis with anti-inflammatory drugs (as with
aspirin and aspirin substitutes), we are simply decreasing symptomatic
responses, and leaving the protozoa free to continue proliferating and
causing further damage."
"If the protozoal theory is correct, then some weeks of the antiprotozoal
drugs should bring about immediate relief in most symptoms, especially as
the body no longer finds need to react against the invader, and the
immunological system can then settle down -- and this is exactly what
Professor Roger Wyburn-Mason and Dr. Jack M. Blount and other researchers
have found happens."
"The above findings show that when the antiamoebic substances furazolidone
and allopurinol are administrated to patients suffering from active
rheumatoid disease, within a few days they cause an exaggeration of the
disease symptoms, which may be severe and accompanied by a rise in ESR,
eosinophilia, sweating, pyrexia, all of which begin to die down after about
ten days. This may be sudden and is followed by rapid and complete relief
of disease symptoms, providing there has not been destruction of joint
cartilage or bone or deformities have been present. Myasthenia gravis and
ulcerative colitis likewise disappear."
The page
http://www.arthritistrust.org/resources/books.php?ww=723
list a number of interesting-sounding books.
Sincerely, Harald

Hi, everyone.
I'd like to know about pople's experiences with antifungal medications. My AP
doctor prescribed
Nizoral to be taken daily along with Minocin and metronidazole. I have read all
the prescribing information,
and I understand that Nizoral can have serious side effects in some patients.
(Of course, I understand that
ANY medication can have side effects in a small 3 of patients, so I take this
warning with a grain of salt.)
The doctor I am seeing has great success treating patients with AP, and I plan
to follow his protocol closely
at first, in order to maximize potential benefits. However, because I plan to
follow AP long-term, I want
to make sure I become as informed as possible about my medications and other
options for dealing with
yeast. I have been taking an excellent probiotic supplement for some time, and
labwork conducted before
I started AP showed no evidence of systemic yeast problems.
So, here's what I'd like to know:
1) What experiences have people had with long-term use of Nizoral? My
rheumatologist is very leary of my taking it
and says that it is inappropriate for me to take it for the purpose of
preventing fungal infection. (My rheumy doesn't
know I'm on AP. He doesn't support any treatment for me at this time, so I am
not telling him what
I am doing! And, yes, I am firing him as soon as I can find a new internist who
won't insist that I see him to monitor my
condition!)
2) What other antifungals have you used (e.g., diflucan), and how often? Do you
take
the medication only if you develop a yeast problem, or do you take it to prevent
yeast? If you take medication for prevention, how often?
Of course, I will talk about options with my AP doctor after I've been on AP 6
months or so (I've only
been on it a week!). But I'd like more information on what options I might
have.
Thanks!
Anne

Hi
I forgot to change the header so you probably received the post via
email. Welcome amyhow and know you can share your enthusiasm anytime
as we all here feel the same.
Love
Marge

Hi Carol:
You wrote the following regarding Mercola:
"I don't follow his eating plan. He does make valid points. He
definitely is healthier than I am so he must be doing something right"
People are individuals, and their responses to
medications/alternative modalities are different. Mercola may be
healthier than you, but you may be healthier than others. Body
chemistry, genetics, environmental issues, stressors, comorbidities,
etc., may affect one person in a detrimental way- and yet another
will react less, or not at all to the above.
Just as our rheumatic diseases present in different fashions- and
our responses to AP present on an individual basis, I believe that
each person responds as an individual to these protocols/alernatives.
Rheumatic dieases may be "lumped", but the uniqueness of each person
is preserved. That is the beauty of humankind. While you certainly
have the freedom to choose any or all of what is presented in
Mercola's site, do not be surprised if your body does not respond
favorably to every single thing mentioned.
Catherine

14 Things PMS Stands For
1.) Pass My Shotgun
2.) Psychotic Mood Shift
3.) Perpetual Munching Spree
4.) Puffy Mid-Section
5.) People Make me Sick
6.) Provide Me with Sweets
7.) Pardon My Sobbing
8.) Pimples May Surface
9.) Pass My Sweatpants
10.) Pathetic Mood Syndrome
11.) Plainly; Men Suck
12.) Pack My Stuff
13.) Permanent Menstrual Syndrome
14.) Potential Murder Suspect

Oooooo Babs, I know how you feel. There are some real jerks for doctors out there!!! I think they all need to get a disease to know how it feels! They wouldn't be so cocky then. However, I hate to wish this disease on anyone.

Jeanette

I hadn't heard of this myself but also would like to know if anyone has info. While it's due to a definite desire to lose weight, of course, I have to admit I chuckled at Richie's humor. Geez Louise, let's not get overly sensitive about a little humor. I, too, have been the brunt of many insensitive remarks from drs. but I don't equate those instances with Richie's comment at all.
OT - As for insensitive dr's comments (remember, consulting with drs. is not the same as discussions with fellow sufferers): I have a muscular dystrophy, myasthenia gravis, in remission now. One classic symptom is trouble chewing and swallowing food since the muscles weaken. When trying to get diagnosed, I weepily asked this moronic dr (one of many) why I had trouble chewing & swallowing food and guess what his response was? "Maybe you're eating too fast", and this was said with a big grin. The jerk. When I finally got dx'd by a neuro, I called him and told him the dx. Boy, did he stutter as I knocked him off his pedestal!
One of many in my bag of Hang 'Em High candidates! :
Be well, all.
Babs
RA 8/98, DX 4/99, AP 11/99
200 mg. Minocin
150 mcg. Synthroid
8 mg. Hytrin
20 mg. Pravachol
20 mg. Celexa
Mestinon
Vits. & Misc. Suplmts.

Hi Kristen ,

I have taken 2 antibiotics without issue but make sure to take your acidophilus to avoid yeast and watch your carbs and sugar intake as yeast thrives on that too .
With the Claritin is is an antihistamine and has a drying effect so make sure you DRINK enough fluids or you can dehydrate . Hope the dizziness passes soon . Warm regards,

socjog

Hi All,
Everyone has been great today. Thanks much for the information and making me
feel so welcome. I know now that I have come to the right place to help me.
Thanks again.
Darryl

I don't follow his eating plan. He does make valid points. He definitely is
healthier than I am so he must be doing something right.

Hi Ritchie,
I could feel Mary Ann's pain when you posted that! That was like my
telling you to insert a spike (or wire brad) up your penis if having
erectile disfunction. Please count to 10 next time you can't help
yourself and talk it out with Andrea first. Women really know about
these things.
I once asked a doctor to help me with a good diet and exercise
program. He told me that the only exercise I needed was to push
myself away from the table. What an a**! I should have told him
that the only exercise I would be doing that day would be putting my
money back in my wallet after that poor advice.
He got quite a laugh out of his comment. I never saw the a** again.
Hugs,
Betty
Hugs,
Betty

Hi Folks,
I read somewhere that the real problem with eggs is in NOT washing
them before cracking them open. The belief was that samonella gets
pushed into the egg from the outter shell from cracking it open.
According to what I read in Catherein's post this wouldn't be so. I
wash all my organic eggs right before cracking them open just in case
the former thought is correct.
My new doctor told me to NOT eat hardboiled eggs as he considers them
dead food. Didn't like scrambled either. First time anyone has ever
told me this one. Told me to cook the whites and have the yolks
soft. He believes all the benefits are in those yolks, if soft.
I will eat an egg that's been prepared over easy but not raw. My
scrambled eggs can't hold a candle to my husband's so on those rare
occasions when he fixes them, dead or not, I'll indulge!
By the way, Mercola eats raw ostrich! Yuck!!! I read him but don't
go with all he believes in. Another case of we alone deciding what
we will eat or won't.
Hugs,
Betty

Hi Susan,
You wrote:
<I am now coming to grips with the fact that I'm going to have to seriously modify my diet [read: eliminate carbs] which I haven't done yet since I eat pretty healthfully).

You have probably gotten some good advice from others here more experienced. But I wanted to tell you that when I gave up grains (which I hated to do as I had given up so much in my diet already) it made a huge difference in the pain. After a while on NO grains I find I can occasionally eat rice, a piece of rice bread, or rice pasta. I have eaten some gluten-free cookies that I can tolerate. It may be the gluten that affects me.
I find this group so very helpful - yes, it is a lifeline.
Sent with care and a prayer,
Rosalie

Has anyone used Ipriflavone for bone density? This was suggested to me
today by a doctor instead of Actonel. He gave me some info to read and I'll
do more research, but I'd like to talk to someone who has used it.
Linda
(RA 25+ years, AP since Nov. 97)

PRESIDENT BUSH SIGNS RARE DISEASES LEGISLATION
New Laws Address Unmet Needs of 25 Million Americans
MEDIA RELEASE:
Contact: Diane Dorman
Office (202) 496-1296; Cell (202) 258-6457
Danbury, Connecticut, November 7, 2002 - The White House
announced today that President Bush signed into law the Rare
Diseases Act (H.R. 4013) and the Rare Diseases Orphan Product
Development Act (H.R. 4014). The legislation addresses a
longstanding unmet need to develop new treatments and cures for
rare disorders.

Rare "orphan" diseases are defined as medical conditions affecting
fewer than 200,000 Americans. Although the incidence of each disease
is small, combined together approximately 25 million Americans suffer
from at least one of the known 6,000 rare disorders.

Listed among the 6,000 rare medical conditions are sickle cell anemia,
Tay-Sachs disease, hemophilia, Fanconi's anemia, Tourette syndrome,
Lou Gehrig's disease (amyotrophic lateral sclerosis) and the Bubble Boy
Disease (severe combined immune deficiency). The majority, however,
are obscure diseases such as Landau Kleffner Syndrome, Wilson's disease,
tyrosinemia, Canavan disease, or Creutzfeldt-Jakob disease. Some of
these illnesses affect only a few hundred people worldwide.

"Not since the passage of the Orphan Drug Act in 1983 which created
financial incentives and research grants, has legislation been enacted
that has such a profound and lasting impact on the millions suffering
with rare diseases," said Abbey Meyers, President of the National
Organization for Rare Disorders (NORD). "The entire rare disease
community has worked so hard for this momentous day".

Originally introduced in August 2001 by Senators Edward Kennedy (D-MA)
and Orrin Hatch (R-UT) - the Rare Diseases Act of 2001 (S. 1379) was
later split into two separate bills: H.R. 4013, sponsored by
Representative John Shimkus (R-IL), nearly doubles the budget for the
Office of Rare Diseases (ORD) at the National Institutes of Health (NIH),
and authorizes the office to enter into cooperative agreements and to
award grants for clinical research into rare diseases. H.R. 4014,
sponsored by Representative Mark Foley (R-FL), doubles the funding for
the Food and Drug Administration's Orphan Products Research Grant program.
Congressman Henry Waxman (D-CA), a long-time supporter of the rare disease
community and the chief sponsor of the Orphan Drug Act, co-sponsored both
H.R. 4013 and H.R. 4014.
To read the complete text of this news release from NORD, go to
www.rarediseases.org. To read the White House announcement of this news,
go to www.whitehouse.gov.

Hi Carol:
You wrote " Catherine, Dr. Mercola said "raw egg yolks". He
cooks the whites as raw egg white deplete biotin. He consumes organic
eggs. Reading his newsletter on a regular basis you get the reasons
for why as well as safety issues.
Carol/Piney"
What part of the egg carries the bacteria?
Researchers say the salmonella bacteria are usually in the yolk
or yellow. But they can't rule out its presence in egg whites. So
everyone is advised against eating raw or undercooked egg yolks,
whites or products containing them. It does not make a difference if
they are "organic" or not.
Egg-associated salmonellosis is a public health problem in the US.
A person infected with the Salmonella enteritidis bacterium usually
has fever, abdominal cramps, and diarrhea beginning 12 to 72 hours
after consuming a contaminated food or beverage. The illness usually
lasts 4 to 7 days, and most persons recover without antibiotic
treatment. However, the diarrhea can be severe, and the person may be
ill enough to require hospitalization. People with impaired immune
systems may have a more severe illness. In these patients, the
infection may spread from the intestines to the blood stream, and
then to other body sites and can cause death unless the person is
treated promptly with antibiotics.
How eggs become contaminated:
Unlike eggborne salmonellosis of past decades, the current
epidemic is due to intact and disinfected grade A eggs. Salmonella
enteritidis silently infects the ovaries of healthy appearing hens
and contaminates the eggs before the shells are formed.
Most types of Salmonella live in the intestinal tracts of animals
and birds and are transmitted to humans by contaminated foods of
animal origin. Strick procedures for cleaning and inspecting eggs
were implemented in the 1970s and have made salmonellosis caused by
external fecal contamination of egg shells extremely rare. However,
unlike eggborne salmonellosis of past decades, the current epidemic
is due to intact and disinfected grade A eggs. The reason for this is
that Salmonella enteritidis silently infects the ovaries of healthy
appearing hens and contaminates the eggs before the shells are
formed.
Although most infected hens have been found in the northeastern
United States, the infection also occurs in hens in other areas of
the country. In the Northeast, approximately one in 10,000 eggs may
be internally contaminated. In other parts of the United States,
contaminated eggs appear less common. Only a small number of hens
seem to be infected at any given time, and an infected hen can lay
many normal eggs while only occasionally laying an egg contaminated
with the Salmonella bacterium.
In affected parts of the US , it is estimated that one in 50
average consumers could be exposed to a contaminated egg each year.
If that egg is thoroughly cooked, the Salmonella organisms will be
destroyed and will not make the person sick. Many dishes made in
restaurants or commercial or institutional kitchens, however, are
made from pooled eggs. If 500 eggs are pooled, one batch in 20 will
be contaminated and everyone who eats eggs from that batch is at
risk. A healthy person's risk for infection by Salmonella enteritidis
is low, even in the northeastern United States, if individually
prepared eggs are properly cooked, or foods are made from pasteurized
eggs.
What you can do to reduce risk
Eggs, like meat, poultry, milk, and other foods, are safe when
handled properly. Shell eggs are safest when stored in the
refrigerator, individually and thoroughly cooked, and promptly
consumed. The larger the number of Salmonella present in the egg, the
more likely it is to cause illness. Keeping eggs adequately
refrigerated prevents any Salmonella present in the eggs from growing
to higher numbers, so eggs should be held refrigerated until they are
needed. Cooking reduces the number of bacteria present in an egg;
however, an egg with a runny yolk still poses a greater risk than a
completely cooked egg. Undercooked egg whites and yolks have been
associated with outbreaks of Salmonella enteritidis infections. Both
should be consumed promptly and not be held in the temperature range
of 40 to 140 for more than 2 hours.
I do read Mercola- and I do not agree with everything he
says/does. Believe me, I have had my fair share of "raw eggs"
consumers in the ER that have had tainted eggs due to drinking them
raw (yes, they even told me they were "organic"). Sushi is another
pet peeve!
To me, it is foolish to hand over one's health to a
potentially dangerous and yet avoidable toxin and to blindly follow
without understanding the repercussions.
Catherine

Hi Martha,

Welcome to our group and thanks so much for your inspiring story! I hope that you will try and join us at the chats and help share your experience with others. I just love reading AP success stories! They help me to keep on keeping on with AP. I have RA and after 2 years on AP am starting to turn the corner myself. I'm not all the way there yet but I know I'm going to be....LOL! Thanks for sharing with us!

Jeanette

Kirstin,
There should be no problem stopping the Zithromax while you take the 7 days
of Augmentin.
Ethel

Hi
Mercola eats raw egg yolks ------I believe the State of California
has banned restaurants from serving Caesars Salad using raw egg
yolks -----another reason why we have to read- digest and come to our
own conclusions
Richie

I'm new to this group and all the abbreviations. Is there a list of the
abbreviations used in this group? Also, what does AP stand for?
Thanks
Darryl

Thank you for your wonderful uplifting post Martha. If this is your
first time on here, please stay with us. I have RA too and have been
on AP for 8 years. My story was parallel to yours until 4 years ago
when I developed CFS and things got complicated. I'm at present
trying to regain the lost ground and still believe that once I fully
address the other complications then the AP will be able to kick in
fully again.
It's wonderful to have your life back I know.
Great positive post, just what we ALL need. Please keep posting and
Thank you for kicking my day off so well.
Hugs, Maree.

Ed
When I started Ap 4+ years ago, I didn't get better right away. I felt that
I got worse. Then four months later I very slowly improved. At first I did
not notice, it was so subtle.The first couple of years were steps forward
and some back. Then the steps back were fewer and not as severe. Right now
I am almost symptom free.
I had rapid onset of RA and started AP almost right away. Sometimes I also
felt that I should be able to "shake " this sooner since I did not have it
long. But it takes as long as it takes. I believe I had an aggressive form
of RA. I don't even want to think where I would be without the AP.
My advice would be to look for anti-inflammatory herbs or drugs to ward of
joint damage while the AP is starting to do its job.
Take care,
Ute

This is my first time to try posting so here goes...hope I am doing this right.
I have had RA for 10 years. During that time I went along for eight of those years with standard meds. For some people they work fine. I found little relief with either the NSAIDS or the DMARDS and over the years slowly went downhill. As it became clear to me that my life was going to soon include a wheelchair, selling my house and giving up a business I love, I was desperate for help. It was only after I had tried traditional meds that I looked into AP.
AP was able to do what traditional meds did not. I went into complete remission and although the damage to my hands and feet will always be with me, I can do just about anything I want. I kicked myself for not trying this therapy out sooner. I had inquired into it with my GP and he said it would not hurt, he just had never dealt with it and was not sure it would work. I had inquired into it with three pharmicists who told me the side effects of intermittent antibiotics at the dose I was on, would be nil. Sun sensitivity was the only one they were concerned with. I asked each one if they felt I could stay on it for many years....they all said yes, they did not see any problem providing it worked.
I know there is no therapy that works for everyone. But for those of us who have tried and succeeded beyond our wildest dreams, this therapy is a Godsend. If we are over enthusiastic in our praises of it......its probably because we are so very happy at how well we feel and want everyone else to share in our good fortune. We know how it is to walk the floor at night in terrible pain. Forgive us if we get overly carried away in our praise of AP. We just want everyone else to feel as well as we do!! And if you don't decide to try it you will never know if this was the golden key for your own recovery. Just one womans opinion. Martha

A couple of days ago I asked for advice regarding dizziness. Well I
went to my internist yesterday and it turns out I had fluid behind my
ears and they said that the zmax wouldn't help that so she prescribed
Augmentin for 7 days and Claritin D. What is your experience taking
two antibiotics at once? I really want to stop the zmax for a few
days, because it just seems like too much.
Thanks so much!!
Kirstin

MEDIA RELEASE

Contact: Diane Dorman

Office (202) 496-1296; Cell (202) 258-6457

President Bush Signs Rare Diseases Legislation

New Laws Address Unmet Needs of 25 Million Americans

Danbury, Connecticut, November 7, 2002 - The White House announced today that President Bush signed into law the Rare Diseases Act (H.R. 4013) and the Rare Diseases Orphan Product Development Act (H.R. 4014). The legislation addresses a longstanding unmet need to develop new treatments and cures for rare disorders.

Rare "orphan" diseases are defined as medical conditions affecting fewer than 200,000 Americans. Although the incidence of each disease is small, combined together approximately 25 million Americans suffer from at least one of the known 6,000 rare disorders.

Listed among the 6,000 rare medical conditions are sickle cell anemia, Tay-Sachs disease, hemophilia, Fanconi's anemia, Tourette syndrome, Lou Gehrig's disease (amyotrophic lateral sclerosis) and the Bubble Boy Disease (severe combined immune deficiency). The majority, however, are obscure diseases such as Landau Kleffner Syndrome, Wilson's disease, tyrosinemia, Canavan disease, or Creutzfeldt-Jakob disease. Some of these illnesses affect only a few hundred people worldwide.

"Not since the passage of the Orphan Drug Act in 1983 which created financial incentives and research grants, has legislation been enacted that has such a profound and lasting impact on the millions suffering with rare diseases," said Abbey Meyers, President of the National Organization for Rare Disorders (NORD). "The entire rare disease community has worked so hard for this momentous day," Meyers continued.

Originally introduced in August 2001 by Senators Edward Kennedy (D-MA) and Orrin Hatch (R-UT) - the Rare Diseases Act of 2001 (S. 1379) was later split into two separate bills: H.R. 4013, sponsored by Representative John Shimkus (R-IL), nearly doubles the budget for the Office of Rare Diseases (ORD) at the National Institutes of Health (NIH), and authorizes the office to enter into cooperative agreements and to award grants for clinical research into rare diseases. H.R. 4014, sponsored by Representative Mark Foley (R-FL), doubles the funding for the Food and Drug Administration's Orphan Products Research Grant program. Congressman Henry Waxman (D-CA), a long-time supporter of the rare disease community and the chief sponsor of the Orphan Drug Act, co-sponsored both H.R. 4013 and H.R. 4014.

NORD

November 7, 2002

Page 2

The Office of Rare Diseases at the NIH was initially established in 1993 to promote research and collaboration on orphan diseases. Today that office serves as a link between basic and translational research, and stimulates new research on rare diseases. H.R. 4013 provides a statutory authorization for this important office and will allow the ORD to play an increased role in formulating the research agenda at the NIH.

In the nearly twenty years since the passage of the Orphan Drug Act, the FDA's orphan products research grant program has supported small clinical trials at academic institutions and small companies. The grants have enabled scientists to develop the preliminary scientific data necessary to prove that a new treatment warrants commercial development and FDA approval. With very limited funding, these grants helped 30 new drugs and medical devices to reach the American market. If not for this program, therapies for such rare diseases as sickle cell anemia and narcolepsy would not be on the market today. H.R. 4014 will enable the FDA to double the number of new research grants, thus propelling development of many new treatments for rare diseases in years to come.

Asked about the next steps, Diane Dorman, NORD's Vice President for Public Policy said, "Our work is still cut out for us. The bills authorize increased funding for both the NIH and FDA research programs, but lawmakers must approve the funds to finance them. So we'll be turning to our friends in Washington, DC asking for their help in the 108^th Congress to ensure that the programs are fully funded in accordance with Congressional intent."

NORD is a federation of approximately 125 voluntary health organizations and over 60,000 patients, families, healthcare providers, and individuals dedicated to helping people with rare "orphan" diseases. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service.

Note to Editors: Go to the White House web site at
http://www.whitehouse.gov for complete details.

-30-

Catherine, Dr. Mercola said "raw egg yolks". He cooks the whites as raw egg
white deplete biotin. He consumes organic eggs. Reading his newsletter on a
regular basis you get the reasons for why as well as safety issues.
Carol/Piney

Diet Supplement Industry Capitalizes On Loopholes In Law
(The San Antonio Express-News) -- The nutritional supplement
industry, by its own calculations, grew into a .6 billion-a-
year business in the 1990s. Its reach is worldwide, and its
power in the U.S. Congress is considerable.
http://www.intelihealth.com/IH/ihtIH/EMIHC000/333/333/357719.html
_

Hi,
The guy I go to for NAET( allergy elimination) also went for thr JMT
training. I askd if this would be better and he thought the naet was
a bit better so I was close to it but stuck with the naet as reducing
the allergies ultimately reduced my joint pain.
Love
Marge

did it work. I have rheumatiod arthritis and am looking for
something that could stop it or help. I read the article in the
files section about JMT and thought I would ask you members for
advise.

H8 Tom,
I have had a lot of sinusitis. The thing is it has 3 causes.
Bacterial, allergy and fungal.
It does not always clear with an antibiotic.
I know I have also had all three causes.
I am treating the allergy one now as well as the fungal.
The bacterial is not present.
I also have used peroxide and water in a warter pik under my lip up
to the sinuses and it helps to drain them. I use salt and water also
as a lavage for the nose.( called Ocean if you want to but it)
The MRI can tell you you have it now as to the cause..thats where it
gets wild.
i did use sporonox and that worked. ( Fungal)
The allergy I am doing the Naet as it eliminates the allergies and
that has worked the best as the allergy can turn into bacterial.
I know I totally confused you LOL. Listen,Sinuses are not easy. Cut
out the dairy..that helps.
Marge

Hi All,
Has anyone tried the JMT treatments? If so, for what illnesses and did it work.
I have rheumatiod arthritis and am looking for something that could stop it or
help. I read the article in the files section about JMT and thought I would ask
you members for advise.
Thanks
Darryl

Rachael,
I recently started on AP and have not been tested for mycoplasma. As Ethel
pointed out in her
recent post, there are organisms besides mycoplasma that may cause rheumatic
conditions. My AP
doctor believes that mutant bacteria, not mycoplasma, are responsible. He
points out that there
are sonething like a million strains of bacteria suspected to exist but not yet
identified. Mycoplasma
testing has been helpful to some patients because a positive test result may
help with insurance issues
or in determining which antibiotic will provide the most effective treatment.
Not all doctors do mycoplasma testing,
and for now, I'm happy not to be tested. I am going to follow the AP protocol
and see what progress I make in
6 months before considering further testing or AP treatment options.
Just thought I'd share my 2 cents!
Best of luck to you from another newbie!
Anne

I was waiting to see my doctor so I stuck with the recommendations on the
bottle: 4/day, which is the typical maintenance dose for normal people. I
understand Dr. Sears recommends 12/day for people with RA.

Yes Rachael don't be surprised if your Lyme test comes back negative. Mine
all did. I don't have Lyme tho - LOL! Was convinced for a long time that I
did - until Doc Sinnott in Iowa sent my blood to a lab in Maryland (PCR)
and it came back positive for Mycoplasma Fermentans. I responded almost
immediately to the treatment.
I am a 32 year old stay-at-home-mom to 3 children. We own a trucking
business so my husband is gone all the time as he's an owner/operator. It's
been very tough. I wouldn't wish what has happened to me on my worst enemy.
My story is at rheumatic.org.
Keep on with your doctor - if you do have a positive mycoplasma you need to
know! I also recommend having your ASO Titer checked if you haven't
already. Treating the mycoplasma and not treating strep in your system will
render the AP useless. (I am being treated for both)
You're on the right track Rachael! Keep advocating and educating yourself -
no one cares about your body like you do!
Jodi Fadness, CD (DONA)
Minnesota Doula
SAHM to Ashlea (6yrs), Katelyn (almost 4yrs), Lars (almost 2yrs)
Rheumatoid Arthritis (7yrs) - Sjogrens Syndrome (1.5yrs) - AP 13mos

I had Mono when I was 16 or 17. I find it very interesting that so many people with AI disease have had this illness.
I have scleroderma (early), just dxd in October 2001.
Have been on AB TX since May. Doing very well, thank God! I take Minocin (brand) 100mg twice a day, every day!
I see my local rheum, who was the one who initially put me on the minocycline. He is awesome. No problem with having to beg for it.
Then I went and saw Dr. David Trentham up at Beth Israel Deaconess in Boston for a second opinion. He switched me to the Brand name form.
Only occassional problem is severe itching.
Denise

I believe down under here, we refer to it as the vege garden lOL to
you too!
Hugs, Maree.

Hi Tom, yes it's a major ongoing issue with me too.
I found a really wonderful interesting site that holds the key I feel
and my GP is reading the info at present that I printed out for him.
You can read my post from the other day it's number 31062 and
entitled Staphlococci Sinus/FMS/Leaky Gut link, or just go straight
to:
http://home.vicnet.net.au/~mecfs/general/whiting.html
Hope you find the info as helpful and enlightening as I have.
Hugs, Maree.

Hello,
Anyone have any experience in battling sinusitis while on the AP?
Just got my MRI results back from my AP doctor and I will have to see an ENT
specialist for "moderate acute pansinusitis". It appears this has been the
cause of all of the face pain I have been feeling for the past year.
Thanks,
Tom Kenney
Reiters Syndrome, Sjogren's Syndrome
AP 18 months

Doggone wrote:
"A while ago I tried Dr. Sears' fish oil. It worked too well in that it
reduced inflammation so much my collar bones would slip out of joint with
nearly every movement of my arms. My right hip also was extremely painful.
The rest of me, especially my hands, were much better."
I'm curious as well, as to how much you were taking. I usually take 6
caps/day. Perhaps you were takin more? I only ask, because although I take
it, I can not see marked improvement, although I will say I haven't taken
Nsaids in over 4 months and am doing fairly well. I am having some flaring
in my elbows and neck, but not severe and that's about it at the moment.
Very rainy and cold though lately, so that is not a good combo. I also take
tumeric and recently ordered some Zyflamend to give it a try. Ginger
supposedly helps as well.
"He is theorizing
that there has been so much inflammation for so many years that the
connective tissue, i.e., tendons, have been stretched like rubber bands and,
as I am 51, the lack of elasticity is causing the shoulders and hip to slip
out of the sockets."
I'm 52 and he may be on to something there. About a year ago, I tore my
left bicep tendon, the one that comes down from the shoulder into the bicep
(that's the good one to tear, if you tear the one between the elbow and the
bicep, you need to see a doctor pronto). I didn't even know I had torn it.
I happened to be combing my hair one day after a shower and noticed that it
looked like my bicep had slipped. Sure enough - tore that sucker loose.
There is nothing they really do for that, so I just live with it. Don't
really feel any pain in at all unless i lift something really heavy and then
it may start burning some. Don't think I want to do a lot of weight lifting
with that arm.
I don't really know what to do to keep them elastic. If you do go the way of
the collagen treatment, let me know how that works out - sounds interesting.
Don't suppose he pointed to anything on the Net that would talk further
about this experimental treatment?
Speaking of fish oil and getting a non contaminated brand, I started today
using a brand of liquid fish oil, that is called Ultra Omega-3 Fish oil
(Lemon-lime flavor) from Health from the Sun
(http://www.healthfromthesun.com/newproducts.html#omega3) . Made in Canada
marketed here in the States by Health from the Sun. I found it in a Whole
Foods Grocery Store (health food store). Molecularly Distilled. Claims to
be independently tested to guarantee truth -in-labeling and absence of PCBs,
heavy metals and other contaminants. 1 tsp contains 1.5 grams of Total
omega3- fatty acids with 850mg of EPA and 560mg of DHA. Made from deep sea
anchovy and sardine body oils. Doesn't taste bad and only 1 tsp is nice.
Started with 1 tsp - may go to 2 tsp though. I think 1 tsp is about the
equivalent of 5-6 of Dr. Sear caps. (4 of his caps contain 1 gram of Omega 3
fatty acids, with EPA of 650mg and DHA of 428mg.)
Just another alternative. The bottle is 8 ozs with 48 servings (1 tsp is a
serving). I can't recall what it cost offhand, although I think it was
around $8 but it might have been more. I think I get Dr. Sear's oil for
around $14.95 for 120 ct (i'm a member of their Zone Club and thus get
reduced prices). That would be the equivalent of 24 servings of the liquid
healthfromthesun product and with the health from the sun product you get
48 servings,so twice as much for less money (assuming my $8-10 figure was
accurate. Obviously fish oil has done nothing for my memory).
Mark

Hi Rachel - I have DM as well and have had great success with AP...
My story is on the rheumatic.org site "Lee Dermatomyositis" - I was
never tested for mycoplasma (or lyme)... I am totally fine now...
let me know if you have other questions.
Liesl
DM dx 9/96
AP Minocycline 11/98-1/00
AP Erythromycin 5/01 - present

I have no advice on increasing the elasticity - seems like I heard that once ligaments get stretched, it's permanent - but I don't know if that's true. But I'm curious, how much of Dr. Sears' fish oil were you taking?

Thanks,
Susan

Hi Everyone,
We had such a terrific chat on Monday night in the new chat room.
Wednesday's chat was fantastic with a whopping 16 people present, even
though a few had to pop in and out. I think we're really enjoying the
ease and roomyness of this new chat room. I love the beautiful colors
to. I hope that even more of you will come and try it out, I think
you'll like it!
Thursday night will be a topic chat. We will be discussing
"Patient/Doctor Communication." We invite all of you to come with
your ideas on how to create better communication between you and your
doctor. Discussion is how we learn and find terrific ideas that help
each and every one of us. The first half hour of the chat will be
devoted to this topic and then the last half hour will be open to any
other questions that you have and general chatting.
So come on out and join us Thursday night at 9:00 p.m. Eastern Time
(8:00 p.m. Central, 7:00 p.m. Mountain, 6:00 p.m. Pacific Time - 11:00
a.m. Friday in Sydney, Australia - 3:00 p.m. Friday in New Zealand -
and 2:00 a.m. Friday for those of you who can stay up that late in
England).
I hope to see you there!
Jeanette
P.S. Directions to the new Chat Room:
Chris has set up a link to the new chat room. Go to the main RO
website (rheumatic.org) and click on "Support Group" on the
left side of the screen...when that screen comes up, scroll past the
support group names till you come to the place to click for the chat.
Click on that and the new website will come up. Click on "AP
Chatroom"...when that screen comes up, type in your name and disease
initials (example: JohnRA) then type in the password you would like to
use. Click on register if you haven't already registered for the chat
room. Then click on "Default" for the chat room and then click on
"Chat" by the words "then, just chat" and you will be in the chat
room.

I am 28 years old with dermatomyositis...I have gotten some great
responses back from my first post and am looking forward to talking
more with those who responded. I am doing a lot of research but I
am still not clear on whether or not most have a positive mycoplasma
test that do the AP therapy. And what test should I ask my doc
for...the PCR? I am going to do the AP regardless but I am aware it
will be easier if I have a positive mycoplasma test? I finally
convinced my docs to test me for lyme cosidering I grew up in a high
risk area. They fought me but I won. But because of immunoglobulin
treatments the test could be false positive or negative. So, I am
trying to get together research on AP therapy in high hopes the docs
I have now will help me. Hope all is going well for everyone.
sending you all thoughts of healing
Rachael

Hi
Is that the one that is taped over the mouth ???????? Lol
Sorry --couldnt resist
richie

Note: forwarded message attached.

Hi
Its not a matter of blame --I just feel we have the decision making
burden----I live my whole life in never placing blame ---I make
decisions --if its a wrong decision I pay the consequences whether it
pertained to medicine --business or what have you ------if I make a
bad decision --I can change or modify to correct a situation
hopefully ---the decision to take Minocin came after about 60-70
hours of pure research and untold phone calls -primarily into the
disease and who is having success in treating it --I didnt shop for a
treatment first --I looked for the doctor who had any documented
success -it included calling the Connetics people about Relaxin --
Furst in Seattle about stem cell and I even had a friend who owns a
Japanese restaurant call Japan for me to speak with some researchers
who were doing SD work -----I prefer to believe it was not luck or an
accident that I went to Trentham and used Minocin ---to this day I
have a back-up plan in place if ever in case Minocin failed ----and
if it did fail or of any other treatment fails it is solely because I
will have made a poor decision ---this is called being stand-up ----
remember with scleroderma there is a 60% mortality in 10 years --I
have enough confidence in my ability to make decisions to go counter
to these statistics ...--Incidentally .I enjoy reading your posts --I
find them highly thought provoking and incisive --Best
Richie

Hello All,
Was just wondering if anyone in this group has ever used that new Weight Loss Patch? Id like to lose about 20lbs.Wonder if it really works, and is it safe to use with Antiobiotics and other meds.
Let Me know your thoughts on this as maybe you know somebody that has tried it, if you don't need it yourself.
Best Wishes to All
Mary Ann
maryannbell@...

HI All, just some of my thoughts on the fish oil controversy...First, I only take Dr Sears pharmaceutical grade fish oil, having read all the info I could, I made the decision that it was worth the extra cost to get the best stuff, no pcbs, no mercury, etc...the other companies, ones from the health food stores, could not supply me with convincing info that their products were safe and not contaminated.As I tested high for mercury anyway, I reasoned I did not want to add to the problem.
Dr. Sears fish oil is molecularly distilled something like 7 times, is guaranteed pure...I think in his book, The Omega Rx Zone, Dr Sears also names another company where this pharmaceutical grade fish oil can be purchased..I, order mine, in capsules and in the bottle from him...NOTE: per Dr Sears, I take a 400 Vit E, dry form, as I am over age 40...along with the fish oil daily...(helps prevent oxidation of the oil, according to Dr Sears..)
I did go off the fish oil, per Dr Sears before my recent surgery, but as soon as possible, I went right back on..For the first time in 8 years, my hair had not been falling out, my BP normalized and my cholesterol counts dropped as well..
I have read Dr Mercolas previous recommendation that the Costco Oil was safe, due to the rapid turnover..that was not enough to convince me when I contacted the supplier and could get nothing firm in the way of answers regarding, possible contaminants...etc..etc.. Just saw on his site that he is not recommending the Costco brand now...but did not read all the info..
I have had no problems with DR Sears fish oil, I love it...Dr Sears has an 800 line for ordering...and one gentleman at the company, the technical person, Dave, is terrific at answering questions. When I called asking many re the crosslinking, etc...because of my Scleroderma diagnosis, Dave went to Dr. Sears himself for the answers....Hope this helps,
PS for all you have so kindly thought of me during my recent surgery, it went very well, thanks to all for the info I received on here...And the path report came back all benign findings...so thank you to everyone for your prayers and support...
Take care, DEBB

Hey Mark,
Could be some type of myositis. You need to have your blood tested for
inflammatory markers. WBC, CRP, Sed Rate...
An MRI of the affected area would also confirm inflammation in the muscle.
Do you have pain, weakness, swelling?
The Myositis Association of America has a great site. Do a search and
connect with those folks. They are very well versed in all forms of
myositis. Most of them use traditional treatment though, and not AP. A few
have though, with good results.
Later,
Kim

A while ago I tried Dr. Sears' fish oil. It worked too well in that it
reduced inflammation so much my collar bones would slip out of joint with
nearly every movement of my arms. My right hip also was extremely painful.
The rest of me, especially my hands, were much better.
I saw Dr. Trentham who ordered x-rays of the shoulders and hips. No damage,
either to the joints or the cartilage (is that how you spell it?), so he is
guessing that the problem is with the connective tissue. He is theorizing
that there has been so much inflammation for so many years that the
connective tissue, i.e., tendons, have been stretched like rubber bands and,
as I am 51, the lack of elasticity is causing the shoulders and hip to slip
out of the sockets. Blood tests show there is no flare. When I stopped the
fish oil, I went back to normal, arthritic me.
Dr. T suggested taking me off Minocin and putting me in an (experimental?)
program of collagen treatment. I panicked because Minocin got me out of bed
and I am terrified to go off it. So, sweet man that he is, he is letting me
stay on Minocin and has set me up with physical therapy. We will meet in
January to see what to do.
Sooooooooooooooooooooo, has anyone else experienced anything like this? Is
there something I can take to help with the lack of elasticity in my
connective tissue? I sure would like to take Dr. Sears' fish oil because it
worked better than anything I've taken to bring down inflammation.
Thanks, Doggone

I tried chat with IE. My message went through faster but the fonts are still to small and too fine for me. When people send e-mails in size 8 or 10 Arial, unless there are only a few sentences, I delete. I figure if anyone wants me to read their message it will be sent in a font size that is readable without strain [INLINE]
Denise [INLINE]

Hi All:
This statement was from Mercola:
"Early this year I finally found a solution for repairing this
problem.
Raw egg yolks and good liquid fish oil seems to get my cholesterol
level up to a much healthier 185."
I cannot believe that he consumes RAW EGGS- It's Not Just the
Cholesterol That Can Hurt, much has been made of the dangers of
cholesterol from eating too many eggs. But eggs can be just as
dangerous if they are not handled, stored and cooked correctly.
The September/October 1998 issue of FDA Consumer points out that
Salmonella enteritidis can be a deadly threat associated with eggs.
Here are some ways to avoid the problem:
Never eat raw eggs. The same goes for beverages and dishes made with
raw eggs -- items such as Caesar salad, hollandaise sauce, homemade
mayonnaise and eggnog -- unless the dish was made with a pasteurized
liquid egg product or pasteurized in-shell eggs.
Store eggs in their carton in the coldest part of the refrigerator,
not in the door, and use within three to five weeks.
Keep hard-boiled eggs in the refrigerator and use within one week.
Wash hands, utensils, equipment and work areas with warm, soapy water
before and after contact with eggs.
When you prepare food, take out only the eggs you need, and return
the carton to the refrigerator.
Cook eggs until yolks are firm.
Catherine

Hi
Just an observation --it was stated that Mercola wrote that Costcos
fish oil dropped his cholesterol about 30 points real fast and he had
to stop it---------lets flip that ----Anyone who battles elevated
cholesterol levels should be beating down Costcos door for the
product !!!!!!!!
Richie

Well I have been doing AP 100mg Monday Wednesday and Friday for one
month now...but dont yet feel any change. My knees,back muscles,arms
and shoulders are getting worse. I know some of you have gone for
six months before you turned to the corner. My conditions are not as
bad as some of you so I thought I may start to get better faster.
I also realize that my condition may not be one that AP can help. I
have not given up but thought I would report in.
My muscles are very tight in my arms and back causing much pain and
stiffness. I do not have swelling. I am one of those that do not
have a real diagnosis except for maybe fiber myalgia. RA, ANA, Sed
numbers are all normal.
One thing, I wish the folks posting on this group would do is stop
with the abbreviations. It is very hard to figure out some times
when someone writes " I have MCT.." Just wading through the
abbreviations can be a chore to understand what they are talking
about. If every one here know what all the letters were we might not
be here.
Still reading. Happy Fall to all.
ed

Well, I saw Dr Brandt in Indianapolis yesterday. He did a thorough
exam - even check some things that the other two rheumies that I have
seen did not. His diagnosis is Psoriatic Arthritis. He is looking at
some blood work and x-rays before perscribing anything.
I asked him about antibiotics. He said he is involved in a 400
patient test of tetracyclines for osteoarthritis. He also knew about
Dr Brown and the use of tetracyclines for RA. But then he said I do
not have RA and that antibiotics would not work for what I have. I do
not know yet what he plans to perscribe.
Needless to say I was somewhat disappointed. I think when I talk to
him again for his treatment I will ask him if there is any harm in me
trying antibiotics, if for nothing else than for my peace of mind
that I have eliminated any possibility that it might work for me. I
really feel pretty strongly that antibiotics would help me at least
in some way. I have asthma, fatigue and now I know PA. And from what
I have read, antibiotics tends to clear up some or all of these
things up.
It gets confusing trying to figure this all out. I do respect some of
these doctors opinions and I realize that I am not a doctor myself.
And here is one that seems to understand that there is a possibility
of treating arthritis with antibiotics. And yet he is limiting the
treatment to certain types of arthritis. I realize that AP does not
work for everything but I think I would at least like to try. Just
some thoughts.
So if you are considereing Dr. Brandt (Indianapolis), you need to
realize that he is not totally pro antibiotics. I'll let you know how
things go from here. Thanks for your ear (or eyes).
Ray

Hi everybody,
No one has ever told me that I need a muscle biopsy. Why do you have
one, and who needs one?
Patti
SD--ap 7mos.

Regarding your post which I have copied below:
I do not claim to be an expert and neither have I ever intended to
scare anyone. This board is supposed to be open to all, to offer
advice and support. I simply replied to a request for information
by asking the member to exercise caution when mixing drugs due to
the possible effect this could have on the liver. This advice
wasn't plucked from thin air, it was given after fully researching
the rheumatic.org site, reading the book 'The New Arthritis
Breakthrough' and literature provided by my doctor which clearly
states irreversible Liver failure with Minocin given in longterm low
doses.
This is pretty tame advice compared to the dangerous advice I have
received from several members for me to buy the powdered gneric from
an animal feed store and put it into capsules to medicate myself!
How totally irresponsible is that? Incidently, even my dog's vet
refuses to supply prescription drugs without a consultation and
thorough medical check-up of the animal. She even insisted on this
before supplying a mild sedative to help my dog through Guyfawkes
night firework celebrations.
To be perfectly honest I have lost faith in this board and have
decided to withdraw my name from its list. No doubt this will be to
the huge relief of the small minority of members who in their
eagerness to raise the profile of a drug which has been scorned for
the past 50 years, resolutely refuse to acknowledge its risks.
From: "Gary" <higgy59@b...
Date: Wed Nov 6, 2002 3:18 pm
Subject: RE: [rheumatic] Advice not welcome
I think the problem is your beating a dead horse here, its been
explained to you with regular liver enzyme testing, which when on
MTX is
usually every 4-6 weeks, you will see a problem arising before liver
damage occurs. No one is saying there are 0 risks of enzymes going
up,
but with proper regular testing the risk is not any higher taking
Mino
and MTX together because you will see a problem before it results in
liver failure. Your scaring people for no reason, you read something
and
now you're an expert. I for one would appreciate you getting on to a
new
subject. Most people start Minocin while on another DMARD and it
works
well that way.
Gary

Now this is the kind of thing that gets me. I subscribe to Dr. Mercola's
newsletter and whereas I remain skeptical about some of the things he does,
for the most part I find his articles entertaining, if nothing else.
But I find the comments below a bit "fishy". I would love to know what he
means by "extensively tested". What sort of studies could he have set up in
his office to "extensively test" these products? It sounds to me more
anecdotal, that a few of his patients claimed they were guessing the fish
oil was causing them a problem and that his cholesterol seemed to go down on
one and up on the other. Is that what we should consider "extensive
testing"?
That's what bothers me about so many of these doctors who post their
"insights" on the Net. Much of what they say is not backed up by any
scientific studies.
Mark
"If you don't take cod liver oil, you will benefit from taking fish oil. I
had previously recommended Costco fish oil capsules based on a terrific
value. However, over the past six months I have extensively tested these in
my practice and although they are don't appear to be contaminated with
mercury or PCBs or seriously oxidized, there is something just not right
about Costco fish oil.
I have concluded that from a clinical perspective they are an inferior
brand. Many of my patients with rheumatoid arthritis or scleroderma would
flare up when they switched from cod liver oil to the Costco fish oil
capsules.
As many of you may know I struggle with a low cholesterol level of around
110. Early this year I finally found a solution for repairing this problem.
Raw egg yolks and good liquid fish oil seems to get my cholesterol level up
to a much healthier 185. However, when I switched to the Costco fish oil
capsules my cholesterol immediately dropped 35 points to 150. When I went to
the Carlson liquid fish oil my cholesterol went back up to 185."

Wow, amazing what a nights rest can do for you! I feel so much
better mentally...I really hit lows sometimes, and you guys are
always here to pick me up. Thanks for all the personal e-mails and
recommendations. I took some Benadryl last night and LO! my elbow
situation all but went away! I had a very light sensation of
tingling (usually severe and keeps me up) and I could sleep with my
elbows bent. I remember Benadryl helping me before...I think I
always stop taking it because it tends to send me to the bathroom a
bit much and dry me out. I am amazed that I have been taking Motrin
for two weeks and no change, but one night of Benadryl did it.
Missi (ML) AP-2 months, Fibro/Raynauds

I think the problem is your beating a dead horse here, its been
explained to you with regular liver enzyme testing, which when on MTX is
usually every 4-6 weeks, you will see a problem arising before liver
damage occurs. No one is saying there are 0 risks of enzymes going up,
but with proper regular testing the risk is not any higher taking Mino
and MTX together because you will see a problem before it results in
liver failure. Your scaring people for no reason, you read something and
now youre an expert. I for one would appreciate you getting on to a new
subject. Most people start Minocin while on another DMARD and it works
well that way.
Gary

In an email from Ethel Snooks, she wrote:
Lindy, I think it best that you just lurk for a while rather than
post to the group.
Thank you.
Ethel
It would appear that advising someone of the possible dangers
associated with taking a highly toxic DMARD (methotrexate)in
combination with AP is not considered good advice. Even though
Rheumatic.org and the book 'The New Arthrits Breakthrough' clearly
state that they do not advise taking both together.
Susan (the member seeking information) actually mailed me to thank
me for my advice.
I must say I have to question a board who's senior members fail to
acknowledge the risks in an attempt to raise the profile of a drug.
Surely patient health and safety should take precedence over this.

Hello Everyone,
There will be an Open Chat 3PM Eastern, 2PM Central, 1PM Mountain and
12Noon Pacific time. Sydney, Australia, is 5AM Thursday and London,
England is 8PM on Wed.
Chris has set up a link to the new chat room. Go to the main RO
website and click on "Support Group"...when that screen comes up,
scroll past the support group names till you come to the place to
click for the chat. Click on that and the new website will come up.
click on "AP Chatroom"...when that screen comes up, type in your name
and disease initials (example: JohnRA) then type in the password you
would like to use. Click on register if you haven't already
registered for the chat room. Then click on "Default" for the chat
room and then click on "Chat" by the words "then, just chat" and you
will be in the chat room.
This is a MUCH larger chat screen with a soft lavender background
that
is easy on the eyes to read.
See ya there!

Hi Jeanette,
Its does not sound great but better than nothing! your family can get
it online sent to them and send it to you?
I know the only dry one I did like was called PB-B. I know Ethel has
one too.Ask her as I do not remember the name of it
Love
Marge

Hi
Well, I know i use the benedryl that is dye free. It is just better
as I know I have a lot of sensitivities. I get a good night srest and
it does help with the histimine release .
Love

Hi Maureen,
I know for me as well as socjog the clindamycin does help. It to me
acted like prednisone as it killed the hot feeling and the pain.
I did go to DR W in NJ for a time and he gave me the Ivs. They were
the best. then I switched back to where you are so my own doc gave me
the oral. i only use when needed but it gets you out a abig jam.
I too was on all those drugs. i know for me I will not do that but
piggyback the antibiotics and work with diet and yeast.
(Need extra acidophilus on the clindy)
Anyhow, I understand how you feel and know for me there are options.
If you do not want to go that route you need not.
Try and get an oral prescription from your doc or I can send you the
nameof the guy in NJ.
Its a thought!
Remember hon..it always is YOUR choice.
Love
Marge

Hi I too had problems with liver studies on mtx b ut not minocin. You
have to be careful with antiyeast drugs as well.
A little milk thistle( silymarin) is good to detox the liver after
sll those drugs.
It did reduce my liver scores.
Love
Marge
--- In rheumatic@y..., Imelda and Peter Sutherland <pelmels@e...

Hi Kirsten,
I am thinking allrgy as that would account for the eating part.
Have you tried switching from zithromax to say doxy or minocin? The
thing is Zithro does not cause the dizziness that the minocin does.
Herxes can happen and zithromax is powetrful. Ever think of using
just erythomycin? Thats a weaker version of zithromax. It may be all
you need. I think too dizziness could be you are overloaded a bit and
the way out is reducing the dose or reducing the strength..ie
erythromycin.
Just a thought.I know Liesl did super on it andit may be something to
think about. Try a bath and skip a day and see if you feel less
dizzy.More is not always better.
You may do better with a lesser drug( cheaper too)
Love
Marge

Hi Socjog,
I think I screwed up the 1st time I sent an answer to you cause I
don't see it on the message board and don't know if even you got it.
When I read some of the old messages I saw what Marge had said to
do....thanks Marge!
Anyway, I'll try again, and if you did get it I'm sorry to be
repetitive......
I'm so sorry about your girlfriend. I think you are a good and
giving person, or you wouldn't be on a place like this board trying
to help others, and I'm sure your friend knew that of you. There
are people who genuinely care about others and then there are those
that just speak empty words.
I'm glad that I could help you out a little. I know these diseases
are chronic and not necessarily deadly, but that doesn't make them
any better or worse than other diseases. I know there were times
that the pain was so unbearable that I