Living with Lupus

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.

An estimated 1.5 million Americans have a form of Lupus. In 1993 I became on of those 1.5 Americans with SLE. Ninety percent of the people with lupus are women; however men and children also develop the disease.1 About sixteen thousand new cases are diagnosed each year. Asian, African-American, and Hispanic women appear to be at a higher risk for lupus than Caucasian women.2 Lupus can be difficult to diagnose because the illness affects everyone differently, not all patients experience the same symptoms. I was lucky to have done enough research to figure out I had lupus and asked my doctor to test me for lupus, it came out positive for SLE.

There are four types of lupus:

• Systemic Lupus Erythematosus (SLE) - is the most common form of the disease. It is also the most serious, frequently causing swollen, painful joints, skin rash, extreme fatigue and organ damage. Mothers showing no signs of Lupus, can also pass antibodies to their babies during childbirth. This is known as neonatal lupus erythematosus and is very rare.


• Discoid Lupus (cutaneous) - lupus is always limited to the skin. It is identified by a rash that may appear on the face, neck, and scalp. Discoid lupus is diagnosed by examining a biopsy of the rash. In discoid lupus the biopsy will show abnormalities that are not found in skin without the rash. Discoid lupus does not generally involve the body's internal organs. Therefore, the ANA test may be negative in patients with discoid lupus. However, in a large number of patients with discoid lupus, the ANA test is positive, but at a low level or "titer." In approximately 10 percent of patients, discoid lupus can evolve into the systemic form of the disease.


• Drug-Induced Lupus - occurs after the use of certain prescribed drugs. The symptoms of drug-induced lupus are similar to those of systemic lupus. The drugs most commonly connected with drug-induced lupus are hydralazine (used to treat high blood pressure or hypertension), isoniazid (TB drug) and procainamide (used to treat irregular heart rhythms), and certain antibiotics such as minocycline. Drug induced lupus is more common in men who are given these drugs more often. However, not everyone who takes these drugs will develop drug-induced lupus. Only about 4 percent of the people who take these drugs will develop the antibodies suggestive of lupus. Of those 4 percent, only an extremely small number will develop overt drug-induced lupus. The symptoms usually fade when the medications are discontinued.


• Neonatal - is a rare condition acquired from the passage of maternal autoantibodies, specifically anti-Ro/SSA or anti-La/SSB, which can affect the skin, heart and blood of the fetus and newborn. It is associated with a rash that appears within the first several weeks of life and may persist for about six months before disappearing. Neonatal lupus is not systemic lupus. Women with lupus can have children, it is best to get pregnant during remission. Consult your doctor.

Lupus is like a snowflake in that no two cases of lupus are the same, although there is one common link, the immune system. Signs and symptoms may differ from one case to another but they all have a hyperactive immune system that produces excess quantities of antibodies that are directed against the body’s own system. Symptoms may surface suddenly or develop slowly. They can be mild or severe, and may be temporary or permanent. Lupus is sometimes characterized by a distinctive rash on the face called malar or butterfly rash. This is where it’s name "Lupus" came from. Lupus is actually the Latin word for "wolf". It is said that the rash resembled a wolf bite. However, the rash does not occur in every case. Most people with lupus do share one characteristic. The disease has the tendency to worsen in episodes known as flares and then to improve or even disappear completely for a time.

The most common signs and symptoms of lupus:

• Rash (face and my appear on the whole body)


• Arthritis


• Kidney problems


• Sensitivity to sunlight and fluorescent light


• Brain or central nervous system problems


• Heart problems – Percarditis, myocarditis, atherosclerosis, valvular heart disease.


• Lung problems


• Mucosal ulcers


• Blood vessel disorders

Other signs and symptoms:

• Fatigue


• Fever


• Raynaud's phenomenon


• Swelling


• Digestive problems


• Hair loss


• Depression


• Percarditis

Experts are still unsure of why autoimmune diseases occur. However, several theories exist regarding key contributors to many diseases such as lupus including heredity, environment and hormones. While lupus isn't directly inherited, research indicates that inheriting certain genes heightens your risk to the disease, which then may be triggered by certain factors, such as:

• Stress


• Hormones


• Lack of rest & sleep


• Sunlight


• Poor nutrition


• Infections

There are some medications that people with lupus may be allergic to or develop and allergic reaction to. Such medications may include but not limited to sulfur medications, codeine and certain antibiotics. If you think you may be allergic or have developed an allergic reaction to a medication contact your lupus medical practitioner immediately.

Using integrated therapies along with your normal medical treatment for lupus may be very beneficial in controlling the illness. It is important to have the support of your family, friends and loved ones.

Here are some safe, natural steps one can take to assist in the treatment of lupus:

• Acupuncture and Herbal Medicine ( Traditional Chinese Medicine)


• Reiki Massage (helps alleviate lupus pain)


• Natural Supplements


• Strong Spiritual Foundation


• Nutrition (eat more organic and natural foods, such as raw vegetables and non-citrus fruits)


• Drinking a lot of safe water (drinking water is vital because it allows the body to function effectively.)


• Meditation & creative visualization


• Biochemic tissue salts


• Glandular extracts


• Exercise


• Yoga

Nutrition is important when you have lupus. High alkaline foods such as the grains buckwheat & millet, lima & soybeans, figs, spinach are just a few. Plenty of raw vegetables for fiber, fruits (non-citrus), raw pineapple, which includes enzymes important for reducing inflammation in joints. (During flare-ups eating raw vegetables may be hard to digest, try juicing them.) Sea vegetables like kelp, dulse, nori are a good source of minerals. Another creative way to supplement a healthy diet is to eat wild greens such as dandelion greens, chickweed, watercress and nettles all are immune enhancers. Nightshade vegetables can increase inflammation and should be avoided; like eggplant, peppers, tomatoes, potatoes and alfalfa sprouts. Avoid dairy products, red meat, cow’s milk, caffeine, salt, tobacco, alcohol and sugar. If you drink milk try drinking almond or soy milk. You can also try Skim Plus. As a replacement to salt try kelp granules. Agave Nector or Stevia is a good alternative to sugar and they both provide sweetness without the unpleasant “sugar rush” and unhealthy sugar spike caused by sugar. Stevia and Agave Nector can also be used by most diabetics. Try cutting out red meat. If you must have meat try eating fish high in omega-3 like salmon, mackerel, halibut, red snapper, sardines are just a few or organic chicken without the skin (White meat).

Before taking birth control pills consult your doctor that is caring for your lupus. Birth control pills have been known to increase the chances of a flare-up in some lupus patients. Some of the side effects from the medications used to treat lupus may be worst then some lupus symptoms.

Here are a few supplements that may be helpful in controlling lupus symptoms:

• Multivitamin and Mineral Supplement


• Magnesium, Calcium & Zinc ( You can get a vitamin with all three)


• Vitamin A


• Vitamin C


• Co-enzyme Q-10


• D,L-pheylalanine (DLPA


• L-tyrosine


• DHEA


• Primrose Oil & Flax Seed Oil


• Bromelain


• Glucosamine


• MSM


• Acidophilus


• L-Lysine

Some people's system may not be able to support D,L-pheylalanine (DLPA), and L-tyrosine. Stick to basics and know your body. It is always best to get your supplements through your food.

In 2007 my SLE went into remission using all the therapies I have listed. To this day the SLE is still in remission and I am not on any medication. However, it does not mean that disease may not resurface in me again. I still care for myself like I did when I had lupus and will continue to. I never again want to live with SLE. The same year I became lupus free I changed my career and became a holistic health & wellness counselor. Almost 80% of my clients are people with SLE and the other 20% are people with other health issues. Having lupus does not mean you can not live a normal life. Making certain healthy lifestyle changes will assist in helping you live a normal healthy life with lupus.