I have just come back from the Dr.s office and had a positive for Lupus .I remember talking to someone on the forum who has it .I would like to talk with you again .If you do not want to respond here please email me .Thanks

-- Patty {NY State} (fodfarms@slic.com), March 22, 2001

Answers

Patty, I just want to mention that my ANA levels always come back high because of chemical poisoning. Just to let you know that sometimes there is something else. Not all doctors believe in Enviormental Illness.

-- Dee (gdgtur@goes.com), March 22, 2001.

Thanks for the positive responses on and off the forum .Some have not yet appeared here .I knew there where mainly good people here despite some of the post . I am scared to death , but the more I read I am no longer convinced I am going to die .We are only in the beginning stages of diagnosing lupus.Thanks again , my thoughts and prays are with all of you .~Patty

-- Patty {NY State} (fodfarms@slic.com), March 22, 2001.

If anyone out there has the time to respond.I don't know what Lupus is .Can anyone explain the symtoms and is there treatment.I appreciate it ,thanks

-- Steve (a12goat@cs.com), March 22, 2001.

Patty I have been diagnosed with scleroderma and Sjorgens syndrome. They tell me I have been exposed to farm chemicals to long. As long as I do what the naturopaths tell me to do I get better. I have Raynauds also. I have been seeing a naturopath in Montana. I stopped turning blue and my hands are softening again. My general health is improving. The rhuematologist in Omaha told me once to keep on doing what I was doing because it helps. Feel free to email if you want to. I have been told I have so many diseases that I don't have. Take care. Cindy

-- Cindy Herbek (dh40203@navix.net), March 22, 2001.

Patty,My mother was diagnosed with Lupus over 20 years ago.She has been under a doctors care since that time and has done really well. She is now in her mid 80's and still doing fine.Stays on her meds,careful not to get too much sunshine etc.

-- JT (gone2seed@hotmail.com), March 22, 2001.

Patty, you and I talked about Lupus in the chat room. What type of Lupus do you have, discoid or systemic? Lupus is not a death sentence and DO NOT read anything written before the late 60's. There have been great advances in diagnosis and treatment since that time. I've had Lupus symptoms since my teens but wasn't formally diagnosed until the early 90's. The most important thing is to listen to your body. I took me years to do this. If you are tired, rest. Period. If you don't the fatigue and joint pain will only get worse. Your doctor will put you on medication, many times she/he will also put you on an antidepressant. Don't worry this is for two things, to help you sleep (many people with Lupus and fibromyalgia-the two are very often found together don't sleep well) and to make your outlook more upbeat. I was on antidepressants for several years until we moved to the farm, I found I didn't need them any longer. There are two very good books, "Living with Lupus" by Mark Horowitz, MD; and "Living with Lupus" by Sheldon Paul Blau, MD. If you can't find the books, or if money's tight (isn't it everywhere?) let me know and I'll mail mine to you. I'll just need them back when you are done.

E-mail me with ANY questions you have. It is scary, it is not a death sentence, and you will feel better.

Thinking of you,

Stacy Rohan in Windsor, NY

-- Stacy Rohan (KincoraFarm@aol.com), March 23, 2001.

Steve,

Systemic Lupus Erythematosus is an autoimmune disease. The simplest way to describe it is like this: the body's immune system is like soldiers. The body itself is like a fortress. Usually the soldiers defend the fort, but in Lupus for some unknown reason the soldiers get confused and start attacking the fort. The antibodies in your body attack the body itself.

The symptoms are many and vary wildly. I have rashes, the most "famous" being the butterfly rash. It's a red slightly raised rash on the face. Overwhelming fatigue, joint pain (all over the body), ulcers in my mouth and nose, I can bruise by someone touching me (the bruises are pretty spectacular in color!) Raynaud's disease (my fingers turn color in the cold and can ulcerate)and I run low grade fevers. There are many, many other symptoms.

There are other types of lupus also, discoid lupus only involves the skin, and late onset Lupus occurs in older people and is usually very mild. There is a drug induced type of Lupus also, but the symptoms usually go away when the drug is withdrawn.

Any more questions, just ask.

Stacy Rohan in Windsor, NY

-- Stacy Rohan (KincoraFarm@aol.com), March 23, 2001.

Patty,

I forgot to ask which blood test came back positive? ANA? That's the one they usually do first. I'm one of the rare few that don't always have a positive ANA--I think it was only positive once and that was a low positive. A more diffinative test is an antiDNA test.

Stacy Rohan in Windsor, NY

-- Stacy Rohan (KincoraFarm@aol.com), March 23, 2001.

Thanks for the info Stacy.I asked because I was going to an bone doctor for waht appears to be nerve damage in my arms,and joint pain in my shoulders and elbows.One of the symthoms I have is if I'm using a hammer ,after about an hour,I can't grasp the handle.My brain thinks I have a tight grip on it, but it will fall out of my hand when I swing it to hit a nail.The DR. wanted me to go for test for Lupus because he said I might be showing symthoms of it.Because it was the welfare's free doctors,(limited time spent on each patient)he didn't have time to explain the symthoms of Lupus,but did say it's possible I might have it.I was billed $2000 dollars as welfare didn't want to pay him for his services on me.Although on papper I have state medical coverage.I am expected to pay.I haven't gone to a Dr. since because I keep getting billed for it and have collection agency's asking me to pay up. Only thing I did know about it was mostly women get it.Thanks again for the info,it's very much appeciated

-- Steve (a12goat@cs.com), March 23, 2001.

Patsy:

At one time there was a nonprofit group, LEANON (LE Anonymous), P.O. Box 10243, Corpus Christi, TX 78410. Their newsletter was Lupus Lifeline. Basically it was on alternative treatments to keep lupus in remission - vitamins and nutrition.

This address may not be current, but the American Lupus Society (23751 Madison St., Torrance, CA 90505) can refer to a lupus support group in your area.

Information is from the 1983 edition of Rodale's The Practical Encyclopedia of Natural Healing. Perhaps your library has, or can borrow, a more current edition.

-- Ken S. in WC TN (scharabo@aol.com), March 23, 2001.

Patty, my heart goes out to you dear! I have two aunts that have lupus, I will contact them as to what works best for them, one is in her late sixties, and she is still getting around fairly well, she has had it for over 30 years. I will read my alternative medicine books and get back to you with ideas, don't let them talk you into massive doses of Prednisone no matter what they promise, it works against you, and will only make the disease worse in the long run.

In the meantime, stay away from all chemicals, they only compromise your weakened immune system even further, and consider a switch to organic whenever possible, at least in breads and flours and vegetables, stay away from meat entirely, unless totally organic, and then in very small quantities.

Hang in there, we are pulling for you!

-- Annie Miller in SE OH (annie@1st.net), March 23, 2001.

Prednisone is absolutely needed if the kidneys are involved. I've been on massive doses and I'll never take them again unless my life is in danger. The side effects are awful but if the choice is to die or take Prednisone I'll take the Prednisone.

A blanket don't take Prednisone statement is not a good idea. Listen to your physician and make your decision based on his/her expertise.

Stacy Rohan in Windsor, NY

-- Stacy Rohan (KincoraFarm@aol.com), March 23, 2001.

HI, my 6 children and I have lupus. As to the prednisone, I took it for a year, and now I have problems, but I would have been dead without it. One of my daughters has had to take it very often over the course of her life (she is only 13), and doesn't have the side affects, thank goodness. I am on alot of medications, but the children aren't , they are too small to take most of it. I will be happy and willing to answer any and all questions that I can. I was told my daughter who is the worst of the children as far as her lupus goes ;-) would not live to see her 10th birthday, she was 8 at the time. She is now 13 and doing very well, considering. Hang in there, it isn't as bleak as it may seem sometimes. As to the ANA, mine is negative, but I have all the symptoms , my children are all positive and have had at some time, all the symptoms. They are doing fairly well now. I went and worked in the yard today!! I haven't been able to do that in awhile. The key is to rest!! I also have fibromyalgia as does my 14 yr old daughter. My boys are ages, 11, 10, 10 and 8 yrs old.

Cindy

-- Cindy in Ok (cynthiacluck@yahoo.com), March 23, 2001.

I knew a lady who had Lupus and my brother-in-law has fibromyalgia and they think Lupus too. He does take some medication and has his good and bad days. I know he can't sit too long or he gets very stiff. Also it is very important for him to rest regularly and keep stress to a minimum.

-- Eve Lyn (evelynv@ipa.net), March 24, 2001.

Hi Cindy, I was shocked to read your post!! Doesn't the fact that you all have it send major warning signals to you?? I have done extensive reading on Lupus (because they kept saying I had it) and have never read where a WHOLE family had it. Have you checked for environmental causes? Leaking furnace, radon seeping into your house, old spray insulation in your home, drinking water, agent orange? Just for starters. I think if that many people in my family had the same illness I would be inclined to get the Public Health Dept. involved. Maybe they could help you do some testing. I read once where a lady and her family were sick and they traced it to the spray foam (formaldehyde) that was in her new house. They took out the insulation and everyone got well, doctors also told her it was Lupus. Now I guess they don't use that type of foam, but it is still in some older homes. Another case I know of first hand where the whole family was sick, they discovered the furnace was leaking carbon monoxide. Another....everyone in an office building had Lupus symptoms and they traced the cause to new carpeting they put in. They put fire retardant sprays in some carpeting. I cannot go into buildings that have it, my eyes water and I get asthma symptoms, but people work in those buildings every day. I don't mean to get on your case, I myself would not accept the Lupus diagnoses in your case, until I was absolutely positively certain. A naturopathic doctor might be a good place to go, most of them take a good look at your environment before they label you. I know also, of cases were people tested positive for lupus and then found the cause to be something else, then were tested again negative. I hope this helps. I am very sorry you and your family are sick. You too Patty! tang

-- tang (tang@mtaonline.net), March 25, 2001.

Cindi, I was thinking the same thing as tang but I was trying to get in touch with my sister to ask her since she knows more about it then me. Excellent books that have this type of information in it is IS THIS YOUR CHILD'S WORLD? by Dr Doris Rapp or THE E.I. SYNDROME by Dr Sherry Rogers.

We got sick from our brand new house. My sister and nieces also have problems so it runs in families. Wouldn't it be great to get off the steroids and be able to be healthy again?

-- Dee (gdgtur@goes.com), March 25, 2001.

Lupus is not familial, autoimmune diseases can "run" in families, ie. Lupus, Rheumatoid Arthritis, Multiple Sclerosis, Scleraderma, etc. but there has been no documented proof that you can genetically give Lupus to your children. My great grandfather had "rheumatism" in his spine which was probably ankolysing spondylosis (another autoimmune disease)or possibly rheumatoid arthritis but it just wasn't diagnosed back then. He hung himself because he couldn't dairy farm any longer- he was very close to the point of being bedridden. There have been studies, a very good one was done in England, that a person could "give" Lupus to their dog. I believe the study indicated that as much as 80% of Lupus patient's dogs would test positive.

The most recent theory on Lupus is: that many people have the gene for Lupus, and autoimmune diseases, in their DNA. It takes a trigger, or most likely a series of triggers, in your enviroment to express the gene and, in turn, cause symptoms. At one time, it was thought that severe sunburns could be a trigger, especially when you were very young. I'm not current on this issue and it may have been debunked. The fact is no one knows much about Lupus, and there is not nearly enough funding for study of the disease.

I am sceptical about the entire family with Lupus also. It sounds to me like chemical poisoning, sick building syndrome, etc. Lupus is such an imitator of other diseases, and it's so hard to diagnosis, that it's sometimes used as a catch-all diagnosis. I think the chronic fatigue syndrome/fibromyalgia is also used as a catch-all. Lupus is a disease of woman of childbearing years, not to say that men and young children don't get it, but I think the ratio was 8:1--I could be wrong on this one it's early, I haven't had much coffee, and I don't have access to my books. It's also more prevalent in African- Americans, and Native Americans people.

There you go, Lupus and autoimmune diseases in a nutshell. I hope what I have said is current.

Stacy Rohan in Windsor, NY where it's cold--15 degrees! It's supposed to be spring.

-- Stacy Rohan (KincoraFarm@aol.com), March 26, 2001.

Cindy, I agree with tang, Dee and Stacy about the whole family having Lupus. I have a rather severe case of environment illness. Many of the symptoms are the same. There's lots of things to try, but what works best for me is aerobic workouts, start slow, work your way up, you'll have more energy, too. Drink lots of pure water. Eat preservative free food and lots and lots of sprouts. If I detox too fast, I get really sick, so it's a long process. Remember, when you heal naturally, things get worse before they get better.

Patty, I'll keep you in my prayers, too. God Bless

I recommend the book Home Safe Home by Debra Lynn Dadd, It tells you how to clean up your environment of chemicals. Another slow process, but change takes time, one step at a time.

-- Cindy (SE In) (atilrthehony_1@yahoo.com), March 26, 2001.

I would once again like to thank everyone for the responses here but also the private ones .Its a nice feeling to know you are not alone and that others care .This is a truely great bunch of people .I am looking into enviromental things to .I will not roll over and have anything run my life .I wish all of you the best and good health .

-- Patty {NY State} (fodfarms@slic.com), March 26, 2001.

I understand the not believing me that the whole family has lupus, but we do. IF it is environmental, then we would have gotten better when we moved, but we didn't. We even left the state, tried out two different states, nothing helped. We have lupus. There is alot of Rhuematoid arthritis in both sides of the family and the doctors think that the kids got a whopper amount of genes, predisposing them to lupus. Yes, we are a rare bunch, the National Lupus Genetic Research Association is studying us very closely and have for a long time, I trust they will find something out if it were environmental. Thanks for the concern though!

Cindy

-- Cindy in Ok (cynthiacluck@yahoo.com), March 26, 2001.

Cindy, The chemicals get stored in your body fat and moving wouldn't necessarily make any difference. Having a low resistance to chemicals also runs in families. Some doctors do not understand or believe in Enviormental Illness and get stuck in their particular field of study so that was why I mentioned it but if you are being monitored, I would hope that the doctors have looked into that factor. Not trying to argue, just stating personal experience.

-- Dee (gdgtur@goes.com), March 26, 2001.

Dee, thats good info to keep in the back of my head .I think its for us all to talk about these things .You never know one of us could be missdiagnosed .Thanks everyone for all the info.

-- Patty {NY State} (fodfarms@slic.com), March 26, 2001.

I appreciate your desire to help us find out that we do not have lupus, but we have been checked for chemicals. My daughter that is the worst with the lupus was sprayed down with diazanon by a neighbor when she was 3 yrs old. When she started having symptoms, that is the first thing they rechecked. She was checked at the time of the spraying and found minimal amounts. I took the garden hose to her while screaming at my neighbor for spraying her. We have all had chemical testing done because of this neighbor. That is something that is checked periodically in case something leaches out and is just becoming visible. There have been none found. We have been living with lupus for a long time now, we aren't new to it.I was determined to prove she did not have it etc... That still does not explain me having it since I was born. Although I spent my life feeling lousy, my mother was told by one doctor when I was about 3 yrs old that I had something like that. Being in the air force, we moved alot so my mother could not continue taking me to that doctor. My illness got forgotten about when my brothers were born with health problems. (Severe allergies for one, the other heart problems). It wasn't until I was an adult that I got a diagnosis, but I had been sick my whole life. That can not be environmental.

-- Cindy in Ok (cynthiacluck@yahoo.com), March 26, 2001.

Patty, I finally got in touch with my sister. We read and research so much that sometimes we forget where we read something and usually the other remembers. Anyway, she said that you should have your candidis levels checked because that mimics Lupus. Don't do a blood test, have a stool done. Good lab is Great Smokies Lab.

A doctor treated me for candidis with Dyfulcan (no test done, just guess) Boy, was I sick with dieoff. Anyway, years later I have been having stomach cramps and had this stool test done. My doctor said everything was within perimiters. Well guess what? Turns out I have NO good bacteria in my intestines. None! How can you be healthy if you are not able to absorb your food properly? See what I mean about the doctors...

-- Dee (gdgtur@goes.com), March 26, 2001.

Cindy, I have forgotten to ask you in the past if you have ever gone through a thorough detoxification program? If you are only visiting physicians, IMO they are witless about such things, and their 'tests aren't worth the paper they're printed on. I don't put much stock in the "gene' theories of everything nowadays; figure they're mostly a way to manufacture a condition they can treat with yet another drug. Anyway, from my readings over the years, lupus certainly seems to be toxin-induced, and I sure think you too could have contracted it as a kid. Contrary to poplular opinion, there are cases of lupus being cured, or gone into remission, or whatever you wanna call it, but they always seemed to include total detoxing. As someone else mentioned, you must get the junk, including the drugs, out of the tissues, especially the fatty tissues, in order to get well. This requires guidance from a wholistic practioner to be complete and safe.

Blessings,

-- Earthmama (earthmama48@yahoo.com), March 26, 2001.

All I can say is that I attend all the symposiums in the area, get the newsletters, stay in touch with the national lupus foundation, we have all been poked, prodded, tested for anything that might cause this.As to the "detox" yes, we have been. I love our doctor, he is "into" natural as well as medicinal aids in maintaining good health. He looks at the whole picture, not just a diagnosis.

He is not the only doctor we have seen, I also tried an herbalist and darn near killed the whole family. I will stick with this doctor I trust, since he is doing a very thorough and fine job. No one else was able to make us feel physically better, he has. Believe me, the kids have seen many specialists as well as myself.

Cindy

-- Cindy in Ok (cynthiacluck@yahoo.com), March 26, 2001.

Lupus can effect the kidneys, without blood/urine testing there is no way to know if the kidneys are being damaged. There are no outward signs or symptoms until they are very damaged-we're talking endstage renal disease and dialyisis here. The only way to properly know the condition of the kidneys, and to a degree the liver, is to have blood work and urinalysis done when your phyician advises.

There are very few "new" drugs used in the treatment of Lupus. I take Plaquenil which is an antimalaria drug that's been around forever. In the late 40's/early 50's there were a high percentage of Lupus suffers dying, in particular young women. A push started to find *anything* that would help these young women. Many, many drugs were tried and a few were helpful-Plaquenil in particular. Since that time time, many advances have been made. There are new antiinflamatory drugs on the market to help control the pain and inflamation of arthritis which is one of the symptoms of Lupus. I take Celebrex right now but I'm going to switch to Vioxx next month when I see my Rheumatologist. I also take a vitamin/mineral/herbal supplement. I have to be very careful about what herbal things I try. People with Lupus can have a problem eating alfalfa-especially sprouts and many herbal supplements have an alfalfa base. One of the worst flareups of my life was because of an herbal supplement that contained alfalfa.

"Contrary to poplular opinion, there are cases of lupus being cured, or gone into remission, or whatever you wanna call it, but they always seemed to include total detoxing." (earthmama48@yahoo.com), March 26, 2001

Earthmama, please provide a cite for the information above. I would like to read the literature from which you found this information. To my knowledge, there is no cure for Systemic Lupus Erythmatosus. Remissions are not common, a remission is a total withdrawal of symptoms for at least six months. I don't mean to be flip about this but as a Lupus sufferer for many, many years I'd be extremely happy if a cure for Lupus was found since I went to bed last night.

Throwing out a blanket statement such as: "If you are only visiting physicians, IMO they are witless about such things, and their 'tests aren't worth the paper they're printed on. I don't put much stock in the "gene' theories of everything nowadays; figure they're mostly a way to manufacture a condition they can treat with yet another drug." (earthmama48@yahoo.com), March 26, 2001 is wrong. Someone is going to believe this statment, not get their kidneys tested and end up on dialysis, or worse.

Stacy "I'm getting off my soapbox now" Rohan in Windsor, NY

-- Stacy Rohan (KincoraFarm@aol.com), March 27, 2001.

Cindy , I'm glad you have a good Dr who looks at the whole picture .Dee, what exactly is that ~c~ thing ? There are allot of you with great information .Please keep sharing , you never know if someone missed something along the way .To be well informed is the best we can do for ourselfs .

-- Patty {NY State} (fodfarms@slic.com), March 27, 2001.

My goodness, Stacy, methinks you should perhaps read my words more carefully! Or maybe I just don't express myself very well.

What I said was "If you are only visiting physicians..."; at no time did I say do not visit physicians. They surely have their place in life-saving situations. When I said "'tests aren't worth the paper they're printed on," I was referring to the tests Cindy mentioned she has done periodically to measure chemical content in herself and her kids. Perhaps I should have been more specific.

Apparently my emphasis on detoxing was not considered of value, but that was my major point.

It's always interesting to me when people become defensive about their illnesses, and defensive about the treatments they are using, even though their quality of life stinks, but that is of course really none of my business. There are many factors involved in auto- immune conditions; they all have most things in common; and believing as I do that all disease is sent here as a painful gift to force us to learn to dig deep into our real spiritual selves, the emotional/mental connection is huge.

"I don't mean to be flip about this but as a Lupus sufferer for many, many years I'd be extremely happy if a cure for Lupus was found since I went to bed last night."

I know you dont want to be flip, and neither do I want to be taken that way, so we will agree to think the best of each other, ok? I personally don't think serious conditions are meant to be gone overnight, but that they will remain as long as the lesson takes. This in no way detracts from my complete empathy with your condition, no matter what it may be. I think we all suffer horribly in this earth school, each in our own ways; I also think its all good in the end, and all meant to happen just as it does.

If you believe in your doctors, then of course that is your own business, and of course you should follow your own path. I merely attempt to give a different perspective on occassion (my own), and often irritate people in the process. But since you always have the option of ignoring what I say and doing what you think is best for you and your family, I hope I'm not wrong in presenting another side. There are others out there who sometimes benefit from my meager contributions, and that is why I speak up. We all will believe what we will, and that is good too.

For those interested, here are a few links that may be helpful:

a href="http://www.spirit-tech.com/"http://www.spirit-tech.com/

a href="http://www.rhealiving.com/"http://www.rhealiving.com/

Blessings,

-- Earthmama (earthmama48@yahoo.com), March 27, 2001.

my html aint so good i guess: heres another try:

-- Earthmama (earthmama48@yahoo.com), March 27, 2001.

Earthmomma,

We are going to disagree on this until the cows come home. No where in the links that you provided did it state *anything* about the scientific research that has been documented on Lupus using colon cleanse and diet. All I read was that if I cleanse my colon and change my diet I'll be cured. I need documented proof that can be verified. There was a link to "testamonials" but it didn't work. Perhaps that's a clue? So, by your account, if I dump my medication, cleanse my colon, and change my diet I'll be cured? What happens if it doesn't and my kidneys fail?

I think we'll have to agree to disagree on this one.

Stacy Rohan in Windsor, NY

-- Stacy Rohan (KincoraFarm@aol.com), March 27, 2001.

Stacy, why do you sound angry with me? (or am I just paranoid?)

If you are only interested in 'scientific research", then you're right, we are not at all on the same page. You will never find 'scientific research' on much of anything to do with natural healing, because research is without exception done/financed by the industries that will monetarily benefit from it. I know quite a bit from personal experience, daily interaction with cancer patients, and my own research how the medical establishment views/censors alternative therapies, and has done for the past half century anyway.

Since I didnt tell you to dump your meds, nor did I tell you specifically that you could be cured by whatever methods, I think "So, by your account, if I dump my medication, cleanse my colon, and change my diet I'll be cured? What happens if it doesn't and my kidneys fail?" is an unfair characterization of what I said, and didnt say. What I DID say, however, was this: "This requires guidance from a wholistic practioner to be complete and safe."

My links were not done well, its true; my computer skills are meager at best; I will try to find another way to send you some if you are interested , but I feel you really are not anyway, so just ignore me.

I stand by my beliefs about health and healing, but feel no ill will for those who disagree with me (almost everyone!). I wish you only the best of good fortune.

Blessings,

-- Earthmama (earthmama48@yahoo.com), March 27, 2001.

I think modern medicine and herbal medicine can meet and work together .There are still many things we do not understand .If something works for you great and please share it .I see no reason you can not do both .I appreciate everyones passion in there beleifs and thankyou all for sharing .Many know much more than I could ever hope too .

-- Patty {NY State} (fodfarms@slic.com), March 27, 2001.

Hi Patty, Candidis is an overgrowth of yeast. Dr Crook has a number of books; THE YEAST CONNECTION, and CHRONIC FATIGUE SYNDROME AND THE YEAST CONNECTION. If you have had a long course of antibiotics, you probably have excess yeast. Another fantastic book is PRESCRIPTION FOR NUTRITIONAL HEALING by Balch and Balch. This book has almost everything in it. I recommend you looking though it the next time you are in a book or health food store.

-- Dee (gdgtur@goes.com), March 27, 2001.

Earthmama,

I'm not angry with you, personally. What I do get upset about is anyone that states that they have, or know, a cure for Lupus. There isn't. Period. It's not just the herbalists, and I do think that alternative medicine has it's place, I have read about chiropractors that state manipulation can cure Lupus also. If the practioners (herbal, chiropractic, diet, etc.) stated that their regime could help alleviate the symptoms, or lessen the severity of a flareup I'd have no problem at all.

Stacy Rohan, in Windsor, NY

-- Stacy Rohan (KincoraFarm@aol.com), March 28, 2001.

I don't want to appear arguementative, but how do you know there is no cure for lupus? Because the doctors tell you so? Because the medical literature says so? Do you really believe that in the whole of history, in the whole wide world, no one has ever been cured of it?

Western medicine says theres no cure for lots of stuff: CFS, Fibromyalgia, MS, MD, arthritis, myopia, hyperopia, asthma, Epstein- Barr, epilepsy, and so on, not to mention the thousands of people who are sent home to die of cancer after the docs have had their way with them. Yet I have read testimonials over the years of dozens of cases of all these conditions being cured, and have actually witnessed many of them myself. Not remissions, cures.

If I am remembering correctly, you are someone who proclaims strong religious faith? Do you not believe that your Jesus can heal all wounds? That miracles happen every day? That life is filled with mystery that cannot be explained with 'science'? That "all things are possible to them that love God"?

I believe all diseases can be cured by natural means, but that is not to say that all cases can be, or even should be. The universe (God) knows what its doing certainly, and we all are priviledged to have choices in what we believe. This is one of the beauties of being in the human family. I merely wanted to point out that IMO, believing there is no cure for something is a guarantee that for that person, there will indeed be none.

Blessings,

Healing is a complex issue, and I think it prudent to always keep one's mind open. In fact, I believe closing oneself to anything is anethma to healing. A body and mind closed tight cannot heal itself; it needs love and compassion and openess to do that.

-- Earthmama (earthmama48@yahoo.com), March 28, 2001.

Sometimes, people are given illnesses so that they may learn from it, share their knowledge and help another human. Patty, keep getting good rest, hang in there. Get a good rheumatologist, and he should be lupus savvy. If not, find one that is. It is the rheumatologist that you will see the most, as far as the basic ills of lupus go. When my daughter was going into renal failure, he handled it well, but knew of a kidney doctor to send her to if need be. At first, as you get accustomed to having lupus, it will seem like your symptoms change alot. Pay attention, think about what you ate, what you did that made you feel worse etc..this will be your guide as to what you can and can't do and when you can or can't do it. Stay out of the sun during the hours between 10:00 am and 4:00 pm if possible. Are you UV sensitive? I am, some of my children are, so this is very important to our well being. Rest when you are tired, try some mild exercises when you feel good, and don't over do! This will help keep the flares at bay, if not, time to call the doctor. :-)

Gotta go, the rain let up, so I need to get to that new goat pen.

Cindy

-- Cindy in Ok (cynthiacluck@yahoo.com), March 28, 2001.

Earthmama,

If you give me a cite, well documented, of someone cured of Lupus, I'll read it and discuss said cure with you. I've had Lupus many years and I'm sick of hearing snake oil salesmen hawk their "cures." You assume that I haven't researched alternative treatments, I have. I found the research sorely lacking. I prefer conventional medical treatment as it works for me. I don't tout "my" treatment as the best option for everyone, just as I don't prescribe, or even suggest, to other people what their medical treatment should be. I'm not a physician, simply someone that has Lupus and has done extensive research on the subject. Do you have Lupus? If not, you don't know what it is to live daily with the disease, and to have your hopes raised-and dashed by someone speaking cure. If yes, than you are entitled to your opinion as it effects your body.

I am a Christian (albeit with Pagan leanings), and I do believe that there have been faith cures of all types of diseases. I believe that the mind and spirit play a huge part in the disease process, and in healing. I also believe that you are being arguementative on this topic. I have already stated that we would have to agree to disagreement on this subject, yet you continue to try to "change" my mind without providing a single work with which to state your point. I'm extremely open minded to all avenues--provide me with a cite- be it a book or other documentation of what you speak. If you can't, or won't, provide some sort of substaniation than drop the subject. Most of the information that I've provided came from two books both titled, "Living with Lupus", the authors, respectively, are Sheldon Paul Blau, M.D., and Mark Horowitz, M.D.. I can provide the ISBN numbers if you'd like. I have also gathered information from The Lupus Foundaton of America, the American Lupus Society, and The National Lupus Erythmatosus Foundation. I've also belonged to both on- line and traditional support groups. The majority of my knowledge comes from actually living with Lupus over 20 years. Now, as I've asked several times, please provide me the cites from which you have gathered your information. You have provided me with your opinion, now substaniate it.

Stacy Rohan in Windsor, NY

-- Stacy Rohan (KincoraFarm@aol.com), March 28, 2001.

i'm a husband of someone with lupus. i think the whole thing about the alterantive cure and medical cure is a good thing. at least we all know we are trying our best to beat this disease from all angles.

there is nothing wrong with hope i think. so believeing that there is probably or could be a cure today or in the future is what keeps me going sometimes. i pray that one day i can finally see my wife be cured. if not in this life then maybe the next.

i understand that it is good to stick to the facts that face us regarding this disease. that there is really no cure "as of today" let's be productive and just find something rather than trying to let each otehr prove a point... anything that will help all of us or contribute is a "good" thing.

-- jam (mjahaman@yahoo.com), August 18, 2001.

Just to pass on some information, I have recently been learning about fungal infections in the body, the book I have is titled; The Fungus Link; by, Doug A. Kaufmann. And there have been a number of health stories on our local news about toxic mold in houses and the health problems the people living there have gone through much of it long lasting, even after they leave the home.

-- Thumper (slrldr@yahoo.com), August 19, 2001.

Hi folks, it's been a long time since we revisite dthis thread.There have been many ups and downs in my health .I am feeling very crappy about now .I had to stop work because of my health .I am very tired and sore most days .I am going to get a second option from another Dr soon.I just got of prednisone .Also had steroid injections in my back and hip .I have joined an egroup for lupus patients , which has helped.Hope everyone else is doing good.

-- Patty {NY State} (fodfarms@hotmail.com), March 18, 2002.