Lupus

February 5, 2000

Someone sent me this email. If any of you can help her please write. Maybe you

can give her some support even tho you havent died yet. (sick humor)

Lupus

> I would appreciate communicating with anyone who has had a daughter or

> sister, 17-27 years of age who has died of complications from systemic lupus

> erythematosus. My e-mail is RWMAG@...

>

August 9, 2000

I was told to limit my sun exposure . I was not that sensitive until I

started taking the Minocin these last three months. It is really hard because

my work as a riding instructor has me spending alot of time outside.

Unfortunately all sunscreens make me itch too. My new Ap doc suggested that I

limit my lessons to the morning hours which i am trying to do now. Patti

March 26, 2002

Hi I have heard or read something similar to that. I have heard that people with active RA can't get AIDS, not that I want to test the theory. I'm curious to know if this is true or just some sort of rumor.

Kimmie

rheumatic lupus

Hello Everyone, I know there is alot of people out here with info , so I need to know more about , the statement in the Lupus book by Dr,W allace where it says that Lupus patients seldom get Aids. What is behind this and are we immune to herpes too? Does anyone on here have any info on our getting these diseases easier or less likely. Any info is appreciated. Thank you chris from Ohio To unsubscribe, email: rheumatic-unsubscribeegroups

June 12, 2002

,

Hang in there, it is very scary, but it is very manageable step by step. I

have had a list of possible diagnosis, especially Lupus, RA, Sjorgens, PA,

Scleroderma, >>>>>>....Over the past 10 years I have had positive and

negative tests for all of the above, but most of the medications are the same

(I think). Somehow, it will always seem illogical to have one small toe make

you feel soooo-o-o-o-o-o-o-o- sick! But all of these have the potential to

do this! I am currently seeing a specialist at Stanford University, he is

checking for something called Mixed Connective Tissue Disorder. He put me on

prednisone to help " bridge " until the MTX & Plaquenil will completely kick

in. It has really helped, I take it in the AM (per RX instructions) with a

big meal. This has given me the energy to be able to swim, walk or do some

sort of exercise everynight after work (which helps with the weight gain &

sleeping).

I know you are in the " down " part of this right now, but with your Dr. help

and meds and prayers you will be OK!! E-mail me direct if you would like to

keep in touched.

Prayers,

Carol

~~~~~~~(

June 12, 2002

Lupus is something I get tested for periodically, because I currently meet 3

criteria. It's been years since it was first mentioned to me, and it is still

considered something that may develop. What other symptoms do you have? You

really shouldn't worry, your symptoms won't suddenly worsen if you find out that

you have Lupus!!! Good luck with the tests.

Roni---

On Wed 06/12, < heather.watson@... > wrote:

From: [mailto: heather.watson@...]To:

@...: Wed 06/12Subject: [ ]

LupusHas anyone on this list been diagnosed with SLE (lupus) as well as thePA?

How did it start and what is your life like now? I've just beentold I probably

have it and will be seeing my rheumy on Friday. This issomething I find a lot

scarier than anything else I've ever had... isthis nightmare ever going to

end?

June 12, 2002

My daughter who is 14 years old, has all the blood markers for Lupus but her

rhuemy believes it is the PA. He is concerned about her using any

medications that might cause drug induced lupus because it may not go away if

she stops the medication. The jury is still out on whether or not Enbrel

causes drug induced lupus. He is waiting for more studies before letting her

try it.

Best of luck.

June 13, 2002

Dear ,

I thought I had lupus for years but just lately had a toe nail peel off and

the diagnosis of P A was made. If you have Lupus remember that it is also a

very variable disease and can be mild or more serious. A lot of the meds

are the same for both diseases. It does get old waiting for the other shoe

to drop but things will bet better. A lot of the symptoms are the same

also. I think that the blood tests for autoantibodies are the things that

distinguish lupus from other diseases. Good luck Anne

[ ] Lupus

Has anyone on this list been diagnosed with SLE (lupus) as well as the

PA? How did it start and what is your life like now? I've just been

told I probably have it and will be seeing my rheumy on Friday. This is

something I find a lot scarier than anything else I've ever had... is

this nightmare ever going to end?

November 5, 2002

Hi Mark,

Thanks. I had the difficult to manaGE Kind of lupus. The reason I

found the book is that my doc gacve me a " i do not know what to do

with you anymore " as the new drugs were not out and I had done the

cytoxan.

I went home and knew I had to find a way.

I just never thought I would be as well as I am.

The lupus symptoms have minimized greatly! I am off prd and mtx as

well as many drugs I was given.

I take damage control drugs as the mainstream drugs ruined a lot of

me.

I explore a lot of different ways now and am better off for it.

However, I have to say, it was minocij that did turn this around for

me

Marge

> Since there have been a number of comments about lupus on the board

(in

> relationship to minocin) and since some of you have mentioned that

you

> actually had lupus, I thought I would pass along a recent post from

my good

> bud, Dr. Weil.

>

> Mark

>

> Lupus: A Natural Approach?

>

> " My husband and mother-in-law have been diagnosed with lupus. Are

there any

> vitamins they can take that might ease their symptoms? "

>

> -- Anonymous

>

> (Published 06/26/2002)

>

> Lupus is an autoimmune disease that can be mild or life-threatening

and can

> cause a wide variety of symptoms, including arthritis, skin rashes,

> neurological problems and kidney disease.

> Fortunately, lupus can, and often does, go into remission -- for

weeks,

> months, even years. The more severe forms are difficult to manage

medically.

> Conventional doctors use immunosuppressive drugs such as prednisone

(a

> corticosteroid), to control severe symptoms. While these may be

necessary

> for short periods, long-term use is not wise, because they can

reduce the

> chance that the disease will go into remission naturally.

> People with lupus should take a good multivitamin/multimineral

supplement

> with my recommended dosages of antioxidants; however, there are

many other

> approaches to this disease. The male hormone DHEA

(dehydroepiandrosterone),

> produced in the adrenals, seems to help and may reduce the need for

> prednisone. Several small studies have shown that taking 200 mg per

day can

> be beneficial and larger studies are underway. Although DHEA is

available

> over-the-counter, I do not recommend that anyone take it without

medical

> supervision. The downside of DHEA use is an increased risk of heart

attack

> and breast and prostate cancer so it is vital that a physician

monitors

> anyone taking it for lupus. Furthermore, over-the-counter brands of

DHEA may

> not be as reliable as prescription forms.

> Your husband and mother-in-law should also modify their diets. I

recommend

> increasing intake of omega-3 fatty acids by eating sardines or

other oil

> fish (salmon, herring, mackerel) three times a week or

supplementing with

> fresh-ground flax seeds (grind two tablespoons a day and sprinkle

over

> cereals or salads). Avoid polyunsatured vegetable oils (safflower,

> sunflower, corn, etc.), margarine, vegetable shortening, and all

products

> made with partially hydrogenated oils. Eat a low-protein, plant-

based diet

> that excludes all products made from cows' milk, be sure to eat

plenty of

> fresh fruits and vegetables (with the exception of alfalfa sprouts,

which

> contain the amino acid L-canavanine that can worsen autoimmunity.)

> For arthritic symptoms take a natural anti-inflammatory agent, such

as

> Zyflamend PM (from New Chapter)containing ginger and turmeric. Get

the right

> kind of regular exercise; swimming or water aerobics are best for

those who

> have arthritis symptoms. And urge your husband and mother-in-law to

avoid

> any conventional doctor who encourages a hopeless or negative

attitude

> toward managing the disease. Investigate traditional Chinese

medicine and

> Ayurvedic medicine, both of which often do well with autoimmune

conditions.

> Definitely try some mind/body therapy, such as hypnosis or

interactive

> guided imagery. The mind/body connection is often obvious in the

ups and

> downs of lupus, and you can take advantage of it to promote healing.

> Dr. Weil

May 14, 2004

, I am interested to know whether you did the parasite cleanse first?

What were your results, if so?

I have been keeping my eyes open for lupus info for a friend in the UK for

some time, and will look it up for you.

I recall that some of my conclusions were that Colloidal Silver would be a

good thing to make and take. http://silverlist.org

Other bits:

(This is a sort of zapping, with the Beck device.http://www.rifeforum.com )

RE LUPUS......my wife successfully treated her lupus with

Becking, 2

> litre a day of good water,

> some colostrum and colloidal silver...regards Gaz

MSM and DMSO

> These two remarkable, related substances can ease

> the pain and inflammation associated with many diseases.

> MSM has been shown helpful, clinically, in lupus erythematosus

> and may be beneficial in other autoimmune (self-allergic) disorders.

http://www.dmso.org/articles/lupus/erythcys.htm

Successful Treatment of Lupus Erythematosus Cystitis With DMSO

By R. Sotolongo, Jr., MD; Frederick Swerdlow, MD; I.

Schiff, MD; Hans E. Schapira, MD

Departments of Urology and Medicine, Mount Sinai Medical Center

New York, NY

Abstract

Systemic lupus erythematosus patients sometimes present with

pathologically confirmed lupus interstitial cystitis. Treatment with

prednisone has not been observed to be successful. Two patients are

presented who were successfully treated with intravesical dimethyl

sulfoxide (DMSO).

Systemic Lupas erythematosus (SLE) is an autoimmune disease

entity with multiorgan involvement. Although the involvement of the

genirourinary tract has been traditionally represented by

lomerulonephritis, the appearance of interstitial cystitis-like signs

and symptoms has recently been postulated as a manifestation of the

SLE constellation. 1,2 Attempts to treat this aspect of the disease

with steroids have been largely unsuccessful,1,2 although at least 1

recent case treated successfully with prednisone has appeared in the

literature. 3 We present 2 cases of interstitial cystitis, hereafter

referred to as lupus cystitis, sucessfully treated with intravesical

dimethyl sulfoxide (DMSO).

www.dmso.org.

DimethylSulfoxide-DMSO/

Today, DMSO is an effective treatment for many illnesses for which we

have no other therapy. It is safer, less expensive, and at least as

effective for a variety of problems for which we are presently using

other, less effective, and more costly treatments. In 1972 the

National Academy of Sciences evaluated the scientific data on DMSO and

concluded it was a least as effective as currently approved treatments

for three musculoskeletal inflammatory problems in man.

We have employed a mixture of DMSO and DMSO2 for the therapy of

fibromyalgia. Patients are treated with intravenous, oral, and topical

routes. It requires approximately two months before any benefit

occurs. Seventy percent of our patients with fibromyalgia improve.

Published articles on DMSO have show benefit in the following

entities:

a.. Interstitial Cystitis

b.. Scleroderma

c.. Raynaud's Phenomenon

d.. Lupus

e.. Rheumatoid Arthritis

f.. Degenerative Arthritis

g.. Ulcerative Colitis

h.. Chronic Obstructive Pulmonary Disease

i.. Reflex Sympathetic Dystrophy

j.. Diabetic Ulcerations

k.. Burns

l.. Scar Tissue

m.. Adjunct in Plastic Surgery

Since there is not enough room to list all the diseases against which

Colloidal Silver has been used successfully, here is a tiny sample:

acne, allergies, appendicitis, arthritis, blood parasites, bubonic plague,

burns (colloidal silver is one of the few treatments that can keep severe

burn patients alive), cancer,(10) cholera, conjunctivitis, diabetes,

gonorrhea, hay fever, herpes, leprosy, leukemia, lupus, lymphangitis, Lyme

disease, malaria, meningitis, parasitic infections both viral and fungal,

pneumonia, rheumatism, ringworm, scarlet fever, septic conditions of the

eyes,

ears,mouth and throat, shingles, skin cancer, staph infections, strep

infections, syphilis, toxemia, trenchfoot, all forms of viruses, warts and

stomach ulcer. In addition it also has veterinary uses, such as for

canine parvo virus.

my sis has Lupus and I would like to get all the 3 for her

> > and if anyone has got this out of them using rife EMEM3D.

> > THANK YOU

> > hotbear4@y...

> > sterling

> hello I had lupus yes had I went on treatments for 7 months and it

> is gone I used an EMT rife machine its fairly inexpensive .It worksI

> will give you some freqencies that I have used 328.772 (lupus)You

> also have to boost the immune system since this is an auto immune

> disease. I work on all my symptems to what symptems dos she have?

> Let me know if you need any more info . God bless

http://www.rifeforum.com

http://home.earthlink.net/~berniew1/ms.html

Is Mercury from Amalgam Fillings the Most Common Cause of

MS, ALS, AD, PD, SLE, RA, MCS, etc. May 2000

Bernard Windham, Chemical Engineer

I. Introduction

Proper functioning of the human body and mind depends on interactions

of the brain and CNS with elaborate metabolic and enzymatic processes

and respiration that occurs at the cellular level in the various

organs and parts of the body, as controlled by low levels of hormones

from the endocrine system. It will be shown that toxic substances,

such as mercury that the body is chronically exposed to, accumulate in

the brain, pituitary gland, CNS, liver, kidneys, etc. and can damage,

inhibit, and cause imbalances at virtually any stage of these various

processes, which can have major neurological, immunological, and

metabolic effects on an individual. . . .

(one recalls that Dr speaks of the damage mercury does in allowing

pathogens to grow that otherwise would not - R)

> lupus, fibro and rhuematoid arthritis. I guess my question is ... do you

think

> that there is information that can cure me!

> I am feeling a bit desperate

understandiable.

Please excuse my boldness.

If you can't be bold (= brave) here, where can you be?

April 5, 2005

Lynda,

It may be too soon to tell if you have a good rheumy or not. A good

one will be like an investigator, looking for all possibilities and

pinpointing a diagnosis. It sounds like yours is doing that. Plus he

moved up your appointment, so he get a few points for that. I know you

are anxious for a diagnosis. Get the tests done and see how your next

appointment goes.

As far as the depression, it is normal to be depressed when having an

illness. I hope you can try to stay positive and not dwell on being

sick and fearing the worse. I know it isn't easy.

a

On Apr 1, 2005, at 3:14 PM, hazelmyst66 wrote:

>

> Hello all,

> Just wanted to thank everyone for previous replies to my first post.

> I've been having a difficult time and not been online. It's hard to

> type. I FINALLY got in to see my Rheumatologist for the first time.

> At least they moved my appt up a month. After looking at the lab

> reports and examining me, he thinks I have Lupus and has ordered more

> tests. I've read where it's not that easily diagnosed so now I worry

> if he's a decent Rheumy or not. He prescribed Naprosyn for now, but

> that's it. I have a script for Ultracet from my " regular " doctor

> too.

> This news has upset me greatly and I've been considered calling my GP

> to see about my depression. I guess I should stop considering and

> act. Any thoughts on the rheumy?? I just thought it odd. I hope

> you

> all are doing good. Take care!

> Lynda

>

April 5, 2005