Greetings and Merry Meet Everyone,

If any of you are wondering why I have been quiet on theboards for the last few days....this is why.....


Yesterday I was diagnosed with Lupus. Anyone here have it or know anything about it? I am trying to educate myself and have looked online, but would love to hear from other folks who have it......I had a multitude of blood tests, and it is finally what they have come up with to explain the fevers, hair loss, joint inflammation and pain, and rashes when I get in the sun.

Here is a little info that I received at the doctor's office:

Lupus is an autoimmune disease that can affect various parts of the body, including the skin, joints, heart, lungs, blood, kidneys and brain. Normally the body's immune system makes proteins called antibodies, to protect the body against viruses, bacteria, and other foreign materials. These foreign materials are called antigens.

In an autoimmune disorder like lupus, the immune system cannot tell the difference between foreign substances and its own cells and tissues. The immune system then makes antibodies directed against itself. These antibodies -- called "auto-antibodies" (auto means 'self') -- cause inflammation, pain and damage in various parts of the body.

Inflammation is considered the primary feature of lupus. Inflammation, which in Latin means "set on fire," is characterized by pain, heat, redness, swelling and loss of function, either on the inside or on the outside of the body (or both).

For most people, lupus is a mild disease affecting only a few organs. For others, it may cause serious and even life-threatening problems. Although epidemiological data on lupus is limited, studies suggest that more than 16,000 Americans develop lupus each year.

The Lupus Foundation of America (LFA) estimates between 1.5 - 2 million Americans have a form of lupus, but the actual number may be higher. More than 90 percent of people with lupus are women. Symptoms and diagnosis occur most often when women are in their child-bearing years, between the ages of 15 and 45.

I see a Rheumatoid specialist in Shreveport in about a month, the appointment I find out about today. (crying)

So.....any takers?

Blessings Bright and Dark,

LE, I am so sorry to hear about your diagnosis. I myself was diagnosed with psoriatic arthritis (PA) (also a genetic, autoimmune disease that affects the connective tissues) a few years ago after experiencing ongoing pain in my knees and fingers (I'm only in my 30s and in good shape). It's not a death sentence and I believe a lot is controlled by your mind and overall outlook. If you let this consume you, it will. There are a lot of people in the PA community that swear by the Makers Diet and the Blood Type Diet. This may help you too. I myself have tried to cut out aspertame, eat more organic meats and eggs and watch my carbs. This seems to help a lot! I just did a 7-hour mountain bike ride in Moab, Utah. I also know there is a new generation of immune system surpressing drugs called biologics (Humera is one) that a lot of PA sufferers have had success with. I am lucky that my condition is at a point that I don't need meds. I don't know if this is a viable option for Lupus, but they are both autoimmune diseases, so you would think so. I wish you the best of luck and wish I could help more. If you aren't pleased with your specialist, maybe you can come to Dallas to see Dr Don Cheatum. Not the best bedside manner in the world, but he's good. That's my rheumatologist.

Thank you Soolka, you helped alot....I am still in a bit of shock about it all, but I know I can live a normal, healthy life with this diesease. It will help tremendously if I can control my stress and emotional rollar coaster....that is my first line of defense....then diet, and as you said, eating more organic foods is the key....

Thank you for the name of your doctor roo, I am only about 4 hours away from Dallas, and it maight be well worth the trip....I interview doctors as if I were hiring them, because I am!

Thank you!

Blessings Bright and Dark,

Be forewarned--as a new patient I had to wait 4 hours to get in. I got very agitated, as you can imagine. There may be even better rheumies in Dallas than Dr Cheatum (not an auspicious name, huh??)--I recommend joining a message board/Yahoo group. I was on the PA one for several months and learned lots of great stuff, I'm sure there's one for Lupus.

Lady Elaine,

It's aweful to hear about your diagnosis. I do not have the condition myself, but I have known a few that do. They told me that cutting their intake of inflammatory foods, like onions, peppers, in addition to the foods Soolka mentioned. In fact there are a number of anti-inflammatory foods you can inculde in you diet that might help. I subscribe to the magazine Herbs for Health, and they continually have articles focusing on such foods. SOme people say that massage and accupuncture helps as well. I'll look up more information, but here is a worthwhile web link:

http://www.naturalfamilyonline.com/2-h&w/53-lupus-treatments.htm

Good point about the foods, Stacy. There is a theory that the nightshade vegetables affect inflammation--potatoes, tomatoes, peppers, eggplants, pimentos, tomatillos. HOWEVER, as a Tex-Mex addict, I really haven't tried to stay away from these (I think I wouls lapse into a coma w/o salsa) and have not experienced a significant difference. With the Blood Type Diet, I am supposed to avoid those veggies. It's a very restrictive diet and I found it really out of sync with how I eat (I'm B+ and not supposed to eat nightshades or chicken). I can say that when I try to stay away from wheat, especially processed white flour, my joints feel a lot better.

I think I spelled Humira wrong. The other biologics out there that you may have heard from are Enbrel, Remicade, Raptiva, and Amevive.

I'm sorry to hear of your diagnosis, LE. I do not have Lupus myself but my mother has had it most of her life. She also suffers from asthma and during research that I was doing to find herbal alternatives to the meds she was taking (I'm studying herbalism with Jeanne Rose in San Francisco) I learned that a person who has Lupus are advised to stay away from herbs that elevate white blood count such as Echinacea, Elecampane (Inula) and Licorice...just about any herb that is known to work with the immune system along with essential oils that tend to have photo-sensitive or hormonal qualities.
I know that is not much info but I hope it helps in some way.

Good Morning Lady E.,

Was distressed to hear about your diagnoses and felt like I needed to look it up a bit before I responded. Was gratified to find that it is an illness that could go into remission. In fact it seems to do just that for many people who may have symptoms when they discover it, but then live symptm free for long periods (years) at a time. This always means that you will have much more control over the situation.

Also that all who honor and love you will have the opportunity to send lotz of healing energy your way( with your permission). With some help from other Pagan Living net members, and guest, we might light up the candles,energize our circles and have a Lady E. healing night.

As I am a newbie perhaps our senior members might lead us here.

Blessings Light and Dark,

Tyche (circle)

Thank you ALL for your kind words and thoughts.....yes, it can be in remission....you should have to learn what your triggers are....I have come to the conclusion it is the Creators way of telling me to lead a healthier life, with less stress and chaos. Sort of a "psychic-two-by-four" in my mind.

I am seeing a rheumatologist on Nov. 11th (it's the soonest I can see him). He comes well-recommended, and I interview doctors like employees...because in effect, you are hiring them. I want to know if I can work with them, and if they are in agreement with my way of thinking...if not, there are plenty more hungry-for-money doctors out there....lol

Thank you all again, and I think this is a marvelous way to share our experiences and thoughts on how to stay well....

Blessings Bright and Dark,

So sorry to hear about your diagnosis, Elaine! But I know you will find not only the best ways to deal with it, but the blessings you can reap from walking through it.

The doctor's said my grown daughter had "elevated levels" of whatever it is they test for in her blood - but did not diagnose her with Lupus - yet. I wonder if there is anything she can do to keep her chances down?

I know a number of women diagnosed with this over the past 15 years. Do you think they've just become better at identifying it, and it's been around all along; or that more women are coming down with it over the past decade or so? It makes me think there may be environmental causes at work - changes in the atmosphere, the sun, our diets, the pollution - something that is triggering this response in so many women!

Keep us posted on what you learn and how you're doing, OK?

Hi LE,

I’ve been doing a little research over the last few days and although I haven’t come up with any herbal treatments specific to Lupus, I did find much on treating rheumatism herbally. Here are a few remedies recommended by Jeanne Rose and taught in her harbalism courses.

A tea made by mixing equal parts of Rosemary, Devil’s Claw root, Comfrey root and leaf, Fenugreek seed, Rooibosch, and Alfalfa. Infuse ½ ounce of the mixed herbs in 3 cups of water overnight. Drink the entire infusion is small amounts at regular intervals through out the next day. This is a good all-around tonic tea for rheumatism and can be consumed overlong periods.

A tincture made from equal parts of Sarsaparilla root, Black Cohash, Wood Betony, Horsetail, Prickly Ash bark, Barberry bark, Celery seed, Nettles, Alfalfa, and Chaparral. 10-12 drops in a teaspoon of water 3 times a day. This tincture is meant to be taken over a long period of time so make at least a quart of the tincture at a time.

Cherries, cherries, cherries! Eat as many fresh cherries as you can stand to. Make a strong infusion of the stems and drink periodically through the day. Make Brandied cherries (fill a jar with fresh whole cherries, cover with a good brandy and let set in a cool, dry, dark cupboard for 2 weeks to 1 month…refrigerate after opening) eating 2 cherries one day and drinking an ounce of the brandy the next. Keep alternating the fruit/liquid so that the cherries stay submerged in the liquid.

Dietary changes should be made. Eat lots of fruits and vegetables and very little red meat. Fruits and veggies should be eaten separately, not together. Add supplements to the diet. Niacinamide, 1-4 grams of vitamin C with bioflavonoid, and 50 mg of vitamin B6. Eat lots of fresh beets and drink fresh juices of Celery, Carrot, or Cucumber. All these vegetables help remove uric acid from the body and that relieves the pain and inflammation from the joints. As does Alfalfa sprouts.

Essential oils that are specific to rheumatism are Cajeput, Cedarwood, Chamomile, Coriander, Cypress, Eucalyptus, Ginger, Juniper Berry, Lavender, Lemon, Marjoram, Rosemary, Sweet Thyme, and Vetivert. Use these Eos in any combination that appeals to you in massage oils, baths along with Epsom salts, or in ointments made to rub into painful and swollen joints. If one of your symptoms of Lupus is over-sensitivity to the sun I would recommend avoiding any essential oils that have photosensitive properties. All citruses come to mind in this case.

Blessings to you LE. I wish you all the best.

Merry Meet Lady Elaine!

I am so sorry to hear of your diagnosis. Healing energy is on its way to you as well as energy for strength to help you through this. I know I did not ask for permission to send you healing, but I also knew without asking that you would accept it!!

Hugs and many blessings,
DesertMist

Thank you Desert Mist, your energies are accepted and I am very honored that you would send them....

Brigga, excellent information!! Thank you for taking the time to look all that up for me! It is a very interesting disease, in that everyone's symptoms can vary, your info can help me immensely, and I truly appreciate your time and effort in doing all the research!

Annie, it takes quite awhile to come up with a diagnosis for Lupus, due to the fact that there is no one test for finding our if you have it. The doctors here in Louisiana and the doctors in Colorado piiled their information and I went through quite a few tests over the last couple of months and it has been decided that this is what I have been suffering from for quite some time. I am slowly accepting the information, but as always, I fight with the idea that I have a dehabilitating disease, it's not going to get me down.

Thank you all for your interest and caring! I would love to hear of anyone else has Lupus or know anyone who does....

Blessings Bright and Dark,

I hate to be the one to say this, but sometimes I think when they give a diagnosis it is merely a way to give someone a name to all the ailmenets that they are having that the medical profession has absolutely no way of diagnosing.

Now don't go getting your panties all in a twist let me finish!

Over the decades of so much exposure to so much bad crap in our food, in our waters, in the ground which grows our food, and even in the air we breathe, not to mention all the exposure to all the negative energies, which also effect ur system functioning as a whole, we have gotten all sortsa screwed up. We have physical ailments, not due to any 'disease', but more of dis-ease.

They have to give everything a 'name' but that does not correctly identify what is wrong, it merely conglomerates all the probelms under a canopy that makes it easier for the patient to be able to handle.

If I came to you, and told you, you are merely no longer in the attunement that you were meant to be in and you have the symptoms of too many years of being out of tune, and these are the physical manifestations of that time, would you be satisfied? Then again if I came to you and told you, after countless numbers of extraesssential testing, in our 'professional opinion' (ie. educated guess) we have decided that in all most likely circumstances you are suffering from ... would this named diagnosis help ease you better?

Then, once they give you that 'name', that identifier, that solves endless ages of wonderings, you can then look it up and 'know your dis-ease.' Like with any demon once you know it's name you can then control it. Be careful though, in knowing it's name, it also then knows yours.

You then begin to focus on that which has ahold of you. You live each day knowing the name of that which is lessening you, and you feed it, countless amounts of energies, feeding it, thereby aiding in it's consumption of you.

That which you focus on is drawn greater into you.