(no subject)

March 29, 1999

Hi : I'm writing first to encourage you to continue your pursuit to

obtain antibiotic therapy for your scleroderma. I have been on antibiotics

for scleroderma for two years and I have had improvement in all symptoms

(except the telangectasia on my face) and complete reversal of some

symptoms. Where I once felt that living a good life was over for me....I

now feel that I have a life back! I have had NO side effects from the

antibiotics - NOT ONE! (1) Are you under the care of a rheumatologist? I

had two rheumatologists tell me they would not prescribe antiobiotics so I

went to my family doctor and he agreed to do it. The hardest part of this

treatment is finding a doctor who will support your decision to use

antibiotics. Try finding a general practitioner instead of a

rheumatologist.

(2) Do you think more information would help convince the doctors who

already told you no? You could print out the report of Dr. Trentham's

study of scleroderma patients.....(3) Ask them what treatment they have

for you and what PROOF they have that it will work and what the side

effects would be. Don't become argumentative.....that won't get you

anywhere....Just tell them you have researched the antibiotic treatment and

it makes sense to you and you would like for them to help you to do it.

(4) go to http://www.rheumatic.org and read all of the information. Read

it over and over again until you really understand it so you can talk to

the doctors you approach with authority, confidence and knowledge.

(5) Keep in touch with this group. There are a lot of us here who are

interested in helping you. (6) I am praying for you that you will be able

to get the treatment you need. Love, Judy (deejay)

----------

> From: angela joannidou <ajoannidou@...>

> rheumaticonelist

> Subject: rheumatic (no subject)

> Date: Sunday, March 28, 1999 7:59 AM

>

> From: angela joannidou <ajoannidou@...>

>

> My name is Joannidou and I'm from Greece.I have scleroderma..

> Some weeks ago I found about the antibiotics therapy that gave me so much

> hope. I took the protocol to my doctors in Greece but they didn't accept

to

> give me the prescription. They think that there is not any official

research

> about this therapy. Please I need your advise. Is it possible to start

this

> therapy by my self? And if shall I do so, who will take care of me if I

have

> side effects, and who will give me the tests for checking my improvement

or

> not?

> Thank you very much..

>

> ____________________________________________________________________

> Get your own FREE, personal Netscape WebMail account today at

http://webmail.netscape.com..

>

> ------------------------------------------------------------------------

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>

> Sign up for a new email list today

>

May 21, 1999

I have AS (along with other arth) - no results yet from minocycline (8 mo) &

erythromycin (4 months)

-Mike-

rheumatic (no subject)

>From: " Myron A. Chornuk " <chornuk@...>

>

>Hello to everyone on the list

>

>I was wondering if AP is effective for ankylosing spondylitis (AS). I've

>been reading everyone's posts for awhile now, but AS has not been

>mentioned. I am very interested in corresponding with anyone with AS

>especially those giving AP a try. Also are there any doctors in Seattle

>that use AP to treat autoimmune diseases?

>

>I look forward to your reply!

>

>Myron

>

>------------------------------------------------------------------------

>ONElist: where the world talks!

>

>Join a new list today.

>

May 21, 1999

My sister has AS and started on the doxycline a few months ago.

Donna

Scleroderma/Raynaud's 4 yrs

AP 2yrs

Mike Stahl wrote:

> From: " Mike Stahl " <mstahl@...>

>

> I have AS (along with other arth) - no results yet from minocycline (8 mo) &

> erythromycin (4 months)

>

> -Mike-

>

> rheumatic (no subject)

>

> >From: " Myron A. Chornuk " <chornuk@...>

> >

> >Hello to everyone on the list

> >

> >I was wondering if AP is effective for ankylosing spondylitis (AS). I've

> >been reading everyone's posts for awhile now, but AS has not been

> >mentioned. I am very interested in corresponding with anyone with AS

> >especially those giving AP a try. Also are there any doctors in Seattle

> >that use AP to treat autoimmune diseases?

> >

> >I look forward to your reply!

> >

> >Myron

> >

> >------------------------------------------------------------------------

> >ONElist: where the world talks!

> >

> >Join a new list today.

> >

>

> ------------------------------------------------------------------------

> Are you hogging all the fun?

>

> Friends tell friends about ONElist!

May 21, 1999

Hello Mike,

I have AS and I have a big different in my disease because of the

antibiotics. I am sure that in time you will have a response from it and

that you will have a better quality of life because of the AP. It is

important to take the vitamins as wells as the antibiotics and that you look

at every level to see the possibilities of something that can interfere with

your response to the antibiotics such as strep, candida, ect.

Nothing comes overnight, one must have patience with getting better.

> rheumatic (no subject)

>

> >From: " Myron A. Chornuk " <chornuk@...>

> >

> >Hello to everyone on the list

> >

> >I was wondering if AP is effective for ankylosing spondylitis (AS). I've

> >been reading everyone's posts for awhile now, but AS has not been

> >mentioned. I am very interested in corresponding with anyone with AS

> >especially those giving AP a try. Also are there any doctors in Seattle

> >that use AP to treat autoimmune diseases?

> >

> >I look forward to your reply!

> >

> >Myron

> >

> >------------------------------------------------------------------------

> >ONElist: where the world talks!

> >

> >Join a new list today.

> >

>

> ------------------------------------------------------------------------

> Are you hogging all the fun?

>

> Friends tell friends about ONElist!

>

June 3, 1999

Yes I am sure that people have died from taking ephedrine, the chemical that

comes from Mahung, check out the ingredients on the label and look at the

warnings. You especially shouldn't be taking it because your taking

procardia which is a vasodilator. There was just a special the other night

on about a 23 year old male with no prior health conditions that died from

taking ephedrine. Put in a search online about Mahung. I know I'm spelling

it wrong but look at your bottle for the spelling.

There are several brands but they all have that same ingredient. If it says

Mahung it is ephedrine. don't be fooled.

Starlight is a good company but very expensive. I am familiar with the

products. I know people that sell them.

I don't take vitamins from walmart. I take shaklee they are cheaper than

starlight but I know shaklee history and superiorty.

GET OFF THE ALERT IT CAN NOT HELP YOU.

Diane

August 3, 1999

rheumatic (no subject)

>From: liz.nusser@...

>

>Anita:

>

>If you read the rheumatic.org diet recommendation, the biggest thing is

sugar...

>the statement is that the protocol won't work if you don't cut it majorly

>back....

>I found that when I dropped my sugar (and I was addicted to chocolate, cookies

>and bakery goods), I no longer had flares....

>

>I also like to garden, love salads...and am growing tomatoes...

>I LOVE tomatoes... and they are 'coming in' like crazy from my

>garden...

>i've been having at least a couple a day for the last few days and my feet are

>now hurting longer in the morning....

>i'm going to have to stop eating them -- at least to the level i have been...

Hi Liz...in a very recent post to Deb I commented on going gluten-free. Addendum

re. tomatoes: At the time I gave up all gluten foods, I also gave up all

nightshades. Which was not easy...I too LOVE tomatoes! And potatoes, and

peppers...you get the picture. Anyway, again, I noticed no difference in pain

levels, inflammation, etc. I did without these foods (plus white sugar, red

meat, dairy) for two years, then began reintroducing some of these foods to my

diet. Noticed no difference. Then one day, while visiting our local farmer's

market, I bought two baskets of cherry tomatoes (my " lunch " ) and literally

inhaled them! Within 30 hours I was in such pain! Did some research, (sorry I

cannot remember where I read this, but it was a reputable publication) and read

that it is the SKIN of the tomatoes that causes them to be arthritic no-nos.

When I think about those cherry tomatoes, and how much skin is involved per

tomato compared to a regular sized tomato, I can believe it. Now, I do avoid

tomatoes - however, on occasion I will have a slice of pizza and spaghetti with

sauce (I am sooooo weak!) and have not been bothered at all. I'll probably

never have a cherry tomato again, though.

If this is all " old hat " to you, I apologize -

Be well,

>so paying attention to specific changes in food and body is necessary...

>

>a real pain...

>but necessary when you have these sensitivities...

>

>----------

>did you go 'cold turkey' off other medication and onto AP?...

>if something else made you feel better you can continue it while the AP gets

>going in your body....

>and, i concur with others when they say, maybe you need doxy or one of the

other

>tetracyclines...

>also, make sure you are getting the original Lederle formulation...

>ask your pharmacist to check what he is giving you...

>

>(I'm on doxy - 100 mg 2xday Zenith brand at the moment and doing well)

>

>God bless,

>

>liz

>

>---------------------------

August 3, 1999

In a message dated 8/3/99 9:04:47 AM Eastern Daylight Time,

liz.nusser@... writes:

<< did you go 'cold turkey' off other medication and onto AP?...

Hi Liz,

Yes, I did but that was 18 months ago.

.....<<<maybe you need doxy or one of the other

tetracyclines...>>>

I intend to bring this up with my new Doctor.

<<<also, make sure you are getting the original Lederle formulation...

ask your pharmacist to check what he is giving you...>>>

Yes, I am getting the Lederle brand.

<<<the biggest thing is sugar...

the statement is that the protocol won't work if you don't cut it majorly

back....>>>

I eat very little sugar and do not crave it at all.

Thanks for you feedback.

Anita

September 3, 1999

Hi Phil:

You have described me to a T. I had all your aches and pains and I went

through all the hassle with the rheumy so I decide that I was going to do

something to get the antibiotics, come hell or high water. Since my rheumy

said no to two of my approaches, I decided to talk to my General Practiciner

and I brought him the book " The New Arthritis Breakthrough " and I downloaded

all the pertinent info from the Net and put it in a binder with tabs and an

index plus a cover page addressed to him. He asked me for 10 days to read

all the material (he was just returning from a 7 week holidays) and then he

called me and said he would do it. My GP is an old doctor (70 years old)

but he looks young, thinks young and was willing to help me.

Since he had no experience with the AP therapy he asked me to try to find a

doctor who was familiar with it in our area. The Support Group was a big

help in assisting me and I did find a doctor who practices Environmental

Medicine and knows the AP. I am extremely please with her and I feel 80%

better in a very short time, so don't despair, give it all you have, don't

take no for an answer and you will get better. What have you got to loose.

I feel like a new woman.

Good luck - Mado RA 7yrs, AP 4 1\2 months

rheumatic (no subject)

>From: ZahmGems@...

>

>Hello group,

>I only became aware of this group a couple of days ago and have been

>bombarded with e-mail since. I've been learning a lot from everyone's

>participation. I've have rheurmatoid arthritis for two years, am 50, and

>keep getting worse to the point where I am thinking that if I continue to

>deteriorate I'll check myself into an opium den in Burma and say goodbye to

>everyone I love. It's been very depressing to give up running, then

>racquetball and tennis, then biciclying and to become weaker and weaker to

>where I can't do even one push-up or pull-up. Everything hurts. I'm

>starting a new nodule near my elbow. My hands and wrists are swollen, my

>shoulders ache, my hip,knee and anke ihibit my walking and the missionary

>position is very difficult with the pressure it puts on my arms etc. Major

>bummer.

> My rheumatologist started me off with a dose of 120mg. of prednisone

in

>the rear end and it was a miracle. Even though I hadn't nearly the number

of

>swollen and sensitive joints I have now, the pain disappeared and I thought

I

>had been healed. He gave me no warning about side affects. About a month

>later the pain began to return and at eight weeks was bad enough to warrant

>another shot. I've been getting shots of prednisone every 4 to 8 weeks for

2

>years now and the doc wants me to start doing the gold shots. When I was

>first seeing him, I told him I'd rather go live in a cave than do something

>as extreme as gold shots. Now, I am considering doint it after watching my

>hands begin to deform and suffering through each day.

> I only heard of the minocin treatment last week and it has given me

>hope. I'm afraid of what my rheumatologist will say when I tell him I

want

>to try this treatment. He is such a straight M.D. that I think it will

freak

>him out. I went to see another somewhat alternative doctor about 5 months

>ago and I know my rheumatologist was threatened. The new doc stressed diet

>and stress, did blood tests and stool tests to try and find possible

sources

>and gave me so much more information that the actual rheumatologist that I

>was very impressed and even began to feel that my rheumatologist was really

a

>quack. I've really changed my diet, quit smoking and cut way back on

>drinking. I'm trying to be more mellow but I keep feeling worse and worse

>and actually look forward to my next prednisone shot. I really don't want

to

>take it but it seems to be the only thing that works. It is definitely

>taking it's toll on my body and I think I am withering away. Reading about

>Dr. Brown's low dose antibiotic treatment has me exhilarated and I want to

>begin immediately. Can anyone suggest a way to get my doctor to do the

>injections and prescribe the minocyn? Or recommend someone who will in the

>Santa Cruz or Monterrey Bay area? Thanks alot. Sincerely, Philip

>

>---------------------------

September 4, 1999

Hi, .

My doctor has been studying the research on the antibiotic treatment for the

last 4 weeks, and just called today to say " get yourself in here, and lets

get this thing going. "

He is an unusual guy, personally and professionally.

I haven't had much luck with rheumatologists, and found him when I

desperately needed some physical therapy for bunches of upper extremity

joint and nerve compression problems.

He is a sports medicine physician with a special interest in arthritis

rehabilitation and pain management. He uses acupuncture in his own practice,

and gives me casual suggestions about the anti-inflammatory properties of

various foods, so I thought he would be open minded about this, but I also

expected he would want to know all the research information, and be

convinced it was a safe therapy with a grounding in science.

So, I found the pertinent press releases about the recent studies with

minocycline on the Arthritis Foundation web site, and mentioned the fact

that the most recent drug guide they published lists minocycline as a DMARD,

with the qualification that it has been found effective in RA, but does not

yet have FDA approval for this purpose. I believe the AF's tentative

endorsement was what persuaded him to look into it. They are almost as

conservative as the American College of Rheumatology. I sent this all in one

e-mail with a few pertinent links, knowing he makes regular use of the

internet.

Then, after reading the research, he found the results hard to dismiss.

You can order the AF drug guide from http://www.arthritis.org, or find it

printed in the July issue of Arthritis Today, their more-or-less monthly

magazine. I subscribe, but libraries will probably have it or you can order

a copy of the magazine from the AF. It is only partially available on-line.

I have read " The New Arthritis Breakthrough " , and plan to take it to my

office visit. However, I felt he would be more impressed with the recent

research than a book aimed at the general public. I did include information

from rheumatic.org., though, because they have a cogent, brief explanation

of the therapy.

So, I sent him the following information. This was enough to get his

interest, and he did the rest of the research on his own. If you think it

might be useful, please use any or all of it. Maybe personalize it and mail

it to your doctor if you don't know his e-mail address. (Many

rheumatologists list their e-mail addresses at the American College of

Rheumatology web site) Here it is:

> Forgive me for taking advantage of this easy access to your e-mail (from

> your web site) but I have lately been deluged with questions and

> information about a treatment for inflammatory arthritis which has been

> around for a long time, and has recently begun to gain the respect of the

> rheumatological mainstream. The treatment is long-term low-dose use of the

> antibiotic minocin. This therapy was developed years ago by

> McPherson Brown, MD, and has been used over time by a handful of clinicians

> who have followed his protocol. Seems many of them have been GP's rather

> than specialists.

>

> There have been some recent studies which seem to show that this treatment

> is in fact quite effective in the early course of RA, and also in

> scleroderma. The arthritis foundation has included it in its list of

> DMARD's in their latest compilation of arthritis drugs, with the note that

> it is not yet FDA approved for this purpose. According to a couple of web

> sites devoted to promoting the therapy, it is equally useful for all the

> inflammatory arthritides, and works at any time in the course of the

> disease, but of course is best begun before joint destruction has occured.

> I picked up a book about the work of Dr. Brown this past week, and it is

> clear he used it for the spondylarthropathies, and that reactive arthritis

> was particularly responsive.

>

> I am including the information I found at the Arthritis Foundation web

> site, along with a bit of info from the other web sites I mentioned. Would

> you take a look at it when you have time? It looks to me like a low-cost,

> low risk therapy which might be worth trying. Thanks for your time.

>

> Probert

>

> ------------------------------------------------------------------------

> A quote from http://rheumatic.org, a volunteer organization of people who

> have been helped by this therapy

>

> HOW DOES ANTIBIOTIC THERAPY DIFFER FROM CONVENTIONAL THERAPY?

>

> Antibiotic therapy is based on the theory that inflammatory rheumatic

> diseases such as rheumatoid arthritis, scleroderma, lupus, juvenile

> rheumatoid arthritis, polymyositis, ankylosing spondylitis, etc. have an

> infectious cause, namely mycoplasma and other bacterial L forms. Using low

> dose antibiotics, particularly from the tetracycline family, the disease is

> attacked at its source. This therapy is equally effective in patients with

> severe and/or long standing disease as it is in those with mild to moderate

> disease. McPherson Brown, M.D. (1906-1989), a renowned rheumatologist

> who practiced in the Washington, D.C. area, pioneered this treatment over

> fifty years ago and successfully used it to treat over ten thousand

> patients.

>

> The toxic medications used in conventional therapy are prescribed to try and

> control or suppress the symptoms. They may or may not work. If they do work,

> it is only a matter of time before they either lose their effectiveness or

> the patient develops side effects, forcing them to discontinue usage. The

> patients often are left worse than before they started the medication.

>

> ------------------------------------------------------------------------

> More information is available at: http://roadback.org, another volunteer

> organization

> ------------------------------------------------------------------------

>

> a quote from the Arthritis Foundation:

> http://www.arthritis.org/at/archive/1998/09_10/rs/rheumatoid.asp

> Medical Crossovers: Teaching Old Drugs New Tricks

>

> A " crossover " drug is making the grade as an effective treatment for RA.

> Minocycline, a derivative of the antibiotic tetracycline that has been used

> for years to treat acne, was proven by studies in the early '90s to help

> people whose RA had failed to respond well to other treatments. A more

> recent study by O'Dell, MD, at the University of Nebraska Medical

> Center in Omaha, provided evidence that minocycline may also be useful as a

> first line of defense against RA, reducing pain and inflammation in people

> newly diagnosed with the disease.

> Now, in a three-year follow-up, Dr. O'Dell and his colleagues have found

> that those who benefited from the drug initially and have since taken it

> continuously have experienced ongoing improvement. Those who stopped have

> experienced flares of their disease.

>

> Although minocycline is an antibiotic, its effects on RA are believed to

> have less to do with its ability to kill bacteria than to block the actions

> of enzymes called metalloproteinases that play a role in the destruction of

> bone and cartilage in the joints. Minocycline may also modify some of the

> body's immune responses.

>

> ------------------------------------------------------------------------

> another quote from the Arthritis Foundation:

> http://www.arthritis.org/resource/pimemos/95_01.asp

> MINOCYCLINE IN RHEUMATOID ARTHRITIS (MIRA) TRIAL

>

> Arthritis researchers reported in a study that an antibiotic drug, called

> minocycline [pronounced MINE-oh-SIGH-clean], reduces joint tenderness and

> swelling in people with mild to moderate rheumatoid arthritis. The study,

> called the Minocycline in Rheumatoid Arthritis (MIRA) trial, was conducted

> at six research centers in the United States. It was published in the

> January 15 issue of ls of Internal Medicine.

> Minocycline is one of the tetracycline family of antibiotics. In this study,

> 219 adults with rheumatoid arthritis were randomly assigned to take

> minocycline pills or inactive (placebo) pills twice a day for 48 weeks.

> Study participants and researchers did not know who was getting the

> minocycline or placebo pills. People in the study remained on

> anti-inflammatory drugs, but discontinued the use of disease-modifying

> drugs.

>

> Researchers found that a greater portion of those taking minocycline than

> those taking placebo showed 50% or greater improvements in the number of

> swollen and tender joints. They also found changes in laboratory tests that

> suggested a reduction in inflammation. The most common side effect was

> dizziness in three percent of those taking minocycline. This study confirms

> results of a similar, but smaller 1994 Dutch study. An editorial

> accompanying the ls study describes the results as of " modest but

> significant clinical benefit " .

> Rheumatoid arthritis is a reaction of the body's immune or defense system.

> It results in inflammation that destroys joint tissues, shape, alignment,

> and may eventually lead to complete destruction of the joint. It causes pain

> and loss of movement that affect an estimated 2.1 million Americans.

> Researchers are not sure how minocycline works in rheumatoid arthritis.

> Although it is an antibiotic, it is not clear whether it works that way.

> Minocycline also inhibits enzymes that are involved in the destruction of

> cartilage and bone. Researchers suspect this may be one possible way it

> works in rheumatoid arthritis. It may also act by reducing inflammation. The

> study's authors called for additional studies to determine how minocycline

> works. Minocycline is not approved by the Food and Drug Administration for

> the treatment of rheumatoid arthritis.

>

> The use of tetracyclines in the treatment of rheumatoid arthritis for their

> antibiotic effect was promoted by the late McPherson Brown, MD. Dr.

> Brown claimed that rheumatoid arthritis was caused by infection with

> mycoplasma in the joints, and that oral and/or intravenous antibiotics

> should be used in treatment.

> The study was funded by the National Institute of Arthritis and

> Musculoskeletal and Skin Diseases, the federal government's arthritis

> research arm. Barbara Tilley, PhD, from the Henry Ford Health Sciences

> Center in Detroit and colleagues in Birmingham, Boston, Brooklyn,

> Burlington, Vermont, and Salt Lake City conducted the six-center study.

> Graciela Alarcón, MD, MPH of the University of Alabama at Birmingham was

> chair of the study committee.

>

> According to the Arthritis Foundation:

>

> * Two recent studies have found a modest benefit with few side effects from

> the use of minocycline in the treatment of mild to moderate rheumatoid

> arthritis.

> * Additional studies are needed to determine the following:

>

> * if early treatment with minocycline or related antibiotics decreases

> progression of joint destruction,

>

> * how minocycline interacts with the disease-modifying drugs commonly used

> to treat rheumatoid arthritis,

> * how effective and safe minocycline is when used for a longer time,

> * how effective minocycline is compared with other treatments,

> * how the drug works -- by antibiotic, anti-inflammatory, or immune

> modifying action(s).

> * Minocycline is not approved by the Food and Drug Administration for the

> treatment of rheumatoid arthritis.

> * Funding for arthritis research through the federal government and through

> voluntary contributions to the Arthritis Foundation is critical to ensure

> that research into causes, preventions, and treatments for arthritis

> continues.

> * For more information, ask for the free Rheumatoid Arthritis brochure. You

> may order online (see Order Brochures) or from your Chapter (see Local

> Offices).

>

September 10, 1999

I can really identify with your symptoms. I am 56 and have had RA for a

little over 2 years now. When I was first diagnosed, I was so bad I could

hardly get out of bed by myself. I hurt all over but especially my knees

and hands and shoulders. I had to be helped to the bathroom and literally

fell onto the toilet. Most of the time I could shower myself but had to be

helped to dry off. I used crutches for awhile and now am using a cane. I

lost about a month of work but have been able to get to work almost every

day since. I have a desk job fortunately.

I, too, was told that stress would keep me from recovering. My husband was

suffering from a mental disorder and was the source of most of my stress.

So one of the first things I did was file for a divorce. I was also put on

prednesone and then methotrexate. I finally quit my rheumatologist and

started seeing a naturopath who put me on a strict diet which helped but

didn't by any means get rid of the pain.

I've had bee venom therapy, hydrotherapy, physical therapy and acupuncture.

I've tried every nutritional I can get my hands on.

Antibiotic therapy is yet another ray of hope and I'm looking forward to my

first treatment probably next week. I've received much encouragement from

this group. Thanks!

September 18, 1999

Joyce, I mentioned it to my doctor when I had my appointment in August. He

said it has to be done regularly and is extremely expensive. It is not a

cure.

rheumatic (no subject)

>From: Joyce <hiattruc@...>

>

>Hi Group,

>

>Has anyone here used or know anyone who has used the Prosorba Column? The

>local news had a spot about it saying it was similar to kidney dialysis

>except it is for rheumatic conditions. Blood is removed from one arm,

>filtered and cleaned through the Prosorba and returned to your body in the

>other arm. Results lasted for several months.

>

>Joyce

>

>---------------------------

September 29, 1999

Can someone please explain what the Rhuematoid Factor means in terms of

severity of illness? Also, can the RA factor ever return to normal after a

positive reading?

Thanks,

Carol*

September 29, 1999

When I was on methotrexate, I used to feel nauseous. I found that ginger

tea healped greatly. Perhaps it would make a difference for you with

Minocin. Ginger also helps with pain and inflammatiion.

rheumatic (no subject)

>From: j.trickey@...

>

>Rhonda,

> Hi, I'm new too. To put in my 2 cents worth, I was

>diagnosed late March and started Cleocin IV's in late

>May. I've been nauseated since on the AP, sometimes

>worse than others, like dduring herx, but my doc said it

>was common and I just work with it. When its real bad I

>take Emetrol, otherwise plain maalox. I take minocon

>100mg. per day every day, vioxx, and ultram about 3-4

>times a day for pain. Also taking acidophilus seems to

>help. Hope you find something that helps. Let us know if

>you do. Good luck with your treatments!

> T.

>

>>

September 29, 1999

Dear Joe,

No, the rheumy I dumped was not Dr. Kempf. In fact,

I kinda feel like he's the one who saved me. I'm shocked

at your experience but the doctor I had trouble with has

a full office everyday too so he must be helping

somebody! I agree that nothing gets to you worse than

having to ask someone for help who either doesnt listen

or makes you think they just want to push drugs at you

regardless of how you feel about it. And thanks for not

making me feel weak for having told you about the

experience.Good luck to you too!

T.

>

> j.trickey@... wrote:

> >

> > From: j.trickey@...

> > ...and I found Dr. Kempf there. By the end of may I was in

> > Arlington, VA getting the IV's. I had a terrible week

> > folowing the treatment and then a remarkable response

> > after that...

>

> ...snip...

>

> > The rheumy was dumped after the

> > second visit when he refused to discuss the cortisone

> > shots he ordered for me and sent his nurse in to tell me

> > that if I didn't take them there was nothing he could do

> > for me and if I changed my mind I could return.

>

> Was that Dr. Kempf you dumped? He's my doctor (I live in andria, VA

> so he's close) and we fight every time I see him. He keeps pushing MTX

> on me and I keep refusing. I have a feeling that my next visit (late

> october) may be my last with Dr. K as he does not yet know about my

> metronidazole/allopurinol experiment. Even though it seems to be working

> for me, and working dramatically, I still would be he tries to push MTX

> again.

>

> For whatever it's worth, I am a 30 year old, strong-tough rugged

> individualist-type who has also cried all the way home after an

> appointment with Dr. K. I'm sure going through that a couple times is

> NOT helping me get better....

>

> Hope you find what will work for you!

>

> Take care,

>

> j.

>

> ------------------------------------

> ph A. Graff

> Director of Digital Prepress

> Graphic Communications, Inc.

> (301) 599-2020

> " The truth will set you free, but

> first it will make you miserable "

October 4, 1999

, I don't know if this will be what you are looking for, but the article is

very interesting. " Sceintific facts versus fiction about mycoplasma)

http://www.immuno-sci-lab.com/html/mycoplasma.html

Carol/Piney/Canada

rheumatic (no subject)

ok can someone send me a good site on mycoplasma? all i can find in that

search is pneumonia, thought i was getting better low grade fever broke for 2

days now it's almost at 100 again, i'd like to read on it so i'll have an

arguement when i see my dr again. thanks,

October 6, 1999

Dr. Garth Nicolson

http://www.immed.org

rheumatic (no subject)

ok can someone send me a good site on mycoplasma? all i can find in that

search is pneumonia, thought i was getting better low grade fever broke for 2

days now it's almost at 100 again, i'd like to read on it so i'll have an

arguement when i see my dr again. thanks,

October 6, 1999

The website from Immunoscience Lab is good, but Vojdani who is the head

researcher there is a little weak on treatment. You folks on this list are

willing to aggressively use antibiotics for RA and other diseases. Vojdani does

not push antibiotic treatment that much. I had my blood tested there. Later

when I tested negative he advised me to stop the antibiotics. That would have

been a big mistake. I would not have continued to recover. I would suggest to

this list that if you want the most accurate information available at this time

look at Garth Nicolson's info along with Vojdani's. Some of you might be

interested to do a search at CNN for new info out on Dr Hyman using antibiotics

to treat Gulf War Illness.

a Carnes

--

--- Original Message -----

From: Bob Zarn

; onelist

Sent: Monday, October 04, 1999 6:09 PM

Subject: Re: rheumatic (no subject)

, I don't know if this will be what you are looking for, but the article

is very interesting. " Sceintific facts versus fiction about mycoplasma)

http://www.immuno-sci-lab.com/html/mycoplasma.html

Carol/Piney/Canada

rheumatic (no subject)

ok can someone send me a good site on mycoplasma? all i can find in that

search is pneumonia, thought i was getting better low grade fever broke for 2

days now it's almost at 100 again, i'd like to read on it so i'll have an

arguement when i see my dr again. thanks,

October 31, 1999

In a message dated 10/31/99 10:31:47 PM Eastern Standard Time, SEG 14 writes:

<< n a message dated 10/30/99 9:56:57 AM Eastern Standard Time,

briarwood@... writes:

<< I would be interested to know how you did with three years of no dairy and

gluten. >>

I did great. I had no symptoms of my arthritis for about 3 years after

diagnosis excsept for a mild achilles tendonitis and 1 wrist episode cured by

acupuncture. I ate no dairy, sugar, wheat, gluten or fat! I was thin and

healthy, but after years I found it impossible to sustain. Now I also

believe that I should have been eating oils and perhaps that screwed up my

immunity. Also the stress of such a strict diet was unbearable. I did eat

well though and found many substitutes for wheat, gluten, etc. at the health

food store. So I got a great education, and when I feel badly I sometimes go

back to the diet (except for no oil) for a week or so and my inflammation

usually decreases.

Sussan >>

In a message dated 10/30/99 9:56:57 AM Eastern Standard Time,