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Thread: Hi! Newly diagnosed and needing support!

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    Default Hi! Newly diagnosed and needing support!

    Hi everyone! I was just diagnosed with SLE last week after a long struggle. I already have a chronic illness called Lysinuric Protein Intolerance (LPI) of which there are only 7 of us in the US. Now I have Lupus too and I'm having trouble dealing with it. I go through periods where I'm thankful to finally have a diagnosis and times when I'm angry that I now have another illness to deal with for the rest of my life. I need any advice anyone can offer and i look forward to talking to you all!

    ~Brandie
    "Success is not measured by what a man accomplishes, but by the courage with which he has maintained the struggle against overwhelming odds." -- Charles Lindbergh

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    Default Diagnosis

    I have never heard of LPI but as far as getting the diagnosis of lupus, half the battle seems to just get to the diagnosis. I had had symptoms for 5 yrs but until I started having seizures and had an MRI and lumbar puncture, I finally got a firm diagnosis.

    Saysusie is extremely knowledgeable about lupus and she's a great resource. I know from just my own experience just take one day at a time. I went through 6 mos of chemo and am now on Cellcept and Plaquenil. When I feel like it's sometimes too much to take, I keep in mind the situation with my best friend. She just recently finally got to remission after having breast and then brain cancer. There is always someone in a more dire situation and even with severe lupus, you can get to remission.

    Hang in there!
    Catlady4520

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    Hi Brandie;
    What I know about LPI is that it is also an immune compromising illness. It is also named hyperdibasic aminoaciduria type 2 or familial protein intolerance. It is an autosomal recessive disorder (A genetic condition that appears only in individuals who have received two copies of an autosomal gene, one copy from each parent. The gene is on an autosome, a nonsex chromosome. The parents are carriers who have only one copy of the gene and do not exhibit the trait because the gene is recessive to its normal counterpart gene) of diamino acid transport. About 100 patients have been reported, almost half of them of Finnish origin. In LPI, urinary excretion of cationic amino acids (ornithine, arginine and lysine) is increased and these amino acids are poorly absorbed from the intestine. Therefore, their plasma concentrations are low and their body pools become depleted. Deficiency of arginine and ornithine restricts the function of the urea cycle and leads to hyperammonemia after protein-rich meals. Deficiency of lysine may play a major role in the skeletal and immunological abnormalities observed in LPI patients.
    Like Lupus (which attacks the protein in our bodies), part of the treatment is a protein-restricted diet. However, your treatment would also include supplementation with oral citrulline. Citrulline is a neutral amino acid that improves the function of the urea cycle and allows sufficient protein intake without hyperammonemia. Under proper dietary control and supplementation, many patients with LPI are able to have a nearly normal life.
    You will find that many of the life-style changes that you make with LPI will also be favorable for LUPUS. Therefore, doing so could enable you to live with a fairly normal life with both diseases.
    I wish you the very best
    Peace and Blessings
    Saysusie

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    Hi Saysusie,
    Actually I have been treated for my LPI for the last 12 years and it is under control. There are about 7 of us in the US and a handful in Italy and Japan but there are about 200 in Finland at this time. Its hard because it is so rare that not many doctors will treat me. Which is mainly why it took so long to get my Lupus diagnosed-the LPI scared away over a dozen doctors. But the LPI part of my life has been stable for a really long time and in fact I'm currently being used as the only American patient in a study being conducted in Italy. I have been deling with it since I was a very young child so I had to grow up quickly. Mainly right now I'm having some trouble getting used to the fact that I have Lupus even though I have known for some time that there is a correlation between LPI and Lupus. Putting me at a higher risk to have Lupus. I also have Lupus Nephritis which is getting better with the help of the meds my immunologist put me on. Do you have any tips on changes I can make that would help me adapt to having Lupus better? I am open to any suggestions-I know there are so many out there suffering with it too. Take Care!
    Brandie
    "Success is not measured by what a man accomplishes, but by the courage with which he has maintained the struggle against overwhelming odds." -- Charles Lindbergh

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    Hi Brandie;
    There are several important lifestyle changes that you should make in order to manage your Lupus.
    1. Lupus makes you sensitive to sunlight (makes us burn easier and causes flares). One very important change is to avoid direct sunlight, wear sunscreen with an SPF of at least 25 whenever you go out in the sun, wear long sleeves and clothing that covers your legs all the way down to your stocking and, as hatlady always suggests, wear hats constantly!

    2. Lupus is a disease of your immune system. Anything that stimulates the immune system can cause a flare-up of the disease. If you have a cut, clean and sterilize it with water and an antiseptic like povidone iodine. Contact your doctor if you get anything more serious than a cold. Some suggest getting a flu shot every season - you should discuss this with your doctor.

    3. Get to know your body and to recognize any warning signals that you may be having a flare. The earlier a flare-up can be treated, the less severe it will be. Some of the common warning signs of a flare-up include:
    increased fatigue, pain, rash, fever, abdominal discomfort, headache, and dizziness.

    4. Eat healthy. Limit your intake of red meats and increase your intake of fresh vegetables and fruits. We have, however, been warned to stay away from legumes and alfalfa sprouts. There are lots of web sites that have suggestions for healthy diets for lupus patients. Eating well can help ensure that your body has the nutrients it needs to function properly and to help you manage lupus and its complications. A healthful diet is one that is low in saturated fat and rich in whole grains, fruits, and vegetables.

    5. REDUCE/ELIMINATE STRESS!!!!!!! Feeling stressed can put extra burden on your body, including your immune system. Therefore, stress can worsen your symptoms and/or cause a flare, so take steps to reduce stress in your life. Take time FOR YOU, to take care of your body, both physically and emotionally!!

    6. Allow yourself time to get recuperative rest! Fatigue is a large part of Lupus and it is important that we allow our bodies to recuperate. Sleep is nourishing to your body. Your overall health, including your immune function, may be compromised if you do not get enough quality sleep or enough rest periods. Strive for 7 to 8 hours of sleep per night, and take naps if you need them.

    7. EXERCISE REGULARLY! Regular exercise helps keep you in good shape and better able to manage the affects of lupus. Regular exercise helps to boost your immune system. But, make sure that you talk with your doctor before starting or changing your exercise program. You may be limited in what you can do by the severity of your lupus. But, it is important that you do some form of exercise on a regular basis.

    Those are the major changes that I suggest. I also say that it is important to ask for and accept help. Do not overburden yourself! Also, take care of your emotional well being. If you feel the need for therapy or counseling, get it!! Our emotional state is just as important as our physical health.

    Peace and Blessings
    Saysusie

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