Lupus

Updated on May 07, 2008
L.N. asks from Midway, TN
15 answers

my daughter has Lupus. She is the worse case that i know of in the united states. its really depressing to talk about. anyone out there with a severe case of Lupus can contact me. thankyou

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E.J.

answers from Raleigh on

Hello L.. As I write this my heart is heavy with sadness for you. Not just sadness for your daughter. But sadness for you, the mother and the caretaker for I know what that feels like. I had a similar incident with my 16 year old daughter. As her parents, her father and I, it was the worst thing that could ever happen to us. The pain, that lasted for 3 years, was unbearable for us and for her. But we have a wonderful father who looks out for us and is looking out for you. I am praying for you as I write this because basically I believe that prayer is what got me through that awful time and believe it or not prayer was what healed my daughter. If you feel like talking to someone who went through a mother's pain regarding an ill child please feel free to contact me at my email ____@____.com heart goes out to you and I will pray for you until I feel it in my heart that Lord has healed your daugher.

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C.T.

answers from Asheville on

L., I have lupus and I know your struggles. In my case though, I have flares where I sometimes appear to be OK and others I feel like I've been hit by a truck. I am 37 and looking back, after a diagnosis in 2004, the Dr.'s now think I had it since I was a child. During my childhood, I would be tested for mononucleosis, low blood sugar, etc. and they never could figure out what was wrong. I was a premature baby in 1970 so they always chalked it up to "her lungs weren't fully developed at birth and they're more susceptible to weakness". As of right now, I have a teaching degree but I can't teach :( I am so unreliable b/c I never know if I'll be ABLE to stand up in a classroom for 1 hour or 8 or ZERO! I feel like a prisoner in my own body. I was a cheerleader, took ballet, tap, jazz, cheerlading, gymnastics, played softball, volleyball, basketball, swam, water skiid, taught aerobics. Now, the least little thing triggers me and I can't even exercise! I know that I'm not helping your problem, just telling you MINE but I just wanted to let you know that I know what it's like to have a life altered and "plan" around the elephant in the room...can't go out on a hike with the family, the sun makes my "butterfly malar lupus rash" flare and then it affects my lungs, brain (central nervous system). OR...I can't feel my hands or feet today b/c of the circulation problem so I can't join in the fun of taking my kids to an amusement park during vacation. I know there are a lot of support groups out there but honestly, I think the best thing is to just surround youself with people who "get it". I did my own research on the internet and by trial & error (after literally THOUSANDS of dollars with a dermatologist & lupus specialist) I learned to control my lupus part on my exterior skin without the money & expense. I also learned more about vitamins, supplements, and foods that trigger inflammation and cause a flare and foods that are GOOD antioxidants and anti-inflammatory foods to help naturally without all of the steroids the Dr.'s throw at you every time something hits, whether it's your heart, lungs, kidneys...the first thing they give is steroids. SO, feel free to talk to me, vent, and I'll tell you all I've learned and support you and your daughter and I'll keep your whole family in my prayers. You can contact me also at: ____@____.com
Stay strong,C.

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D.L.

answers from Fayetteville on

Hi L.,

My name is D. and I too have a daughter with a severe form of Lupus. My daughter has SLE Lupus Cerebritis and was diagnosed in 2005 in her senior year of high school. The hardest thing I have ever had to do is watch my daughter suffer. But because of our love for life and each other we get through it day by day. I am truly sorry your daughter isn't doing well. I know it is very difficult to watch and to have to handle everything that goes along with this unforgiving disease. The suffering the 24 hour care taker, the appointment maker and the bad guy that has to make them do it even though they feel like they can't possibly go on. It is very stressful and ultimately draining to be a participant in this disease process along with your child and unless you have been there you just don't understand the full dinamics of effort and commitment. Have faith and happiness in every part of your life will help you get through. Mine and my daughters sense of humor is most deffinately an off beat one but it is a coping mechanism that works for us and it helps us deal with all of the loads of stress that comes along with this adventure. I truely hope that your daughter gets to feeling better very very soon. Keep your chin up and your spirits high and it helps you get through all of this madness. If you would like to contact me directly my E-Mail is ____@____.com in there because what else can you do!!!! May your love for each other get you through.

D. L.

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S.B.

answers from Charlotte on

L.,
Lupus can be so devastating and I am so sorry that your daughter and you are having to endure this terrible disease. I have supported the Lupus Foundation for almost 20 years in both the USA and Canada. I myself, do not have Lupus, but have 3 family members and one close friend who all do. In my profession, we care for Lupus patients and most recently have a teenager with Lupus. If you have not already, i would encourage you to visit the national lupus website and find the local chapter in your area. The support, education and information can make a tremendous difference. Also, if you ever need someone to talk to - please email me at ____@____.com can also find my office number on our website. Please know that there are so many people out there to support you - including me.

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S.H.

answers from Charlotte on

L., The following article was sent to me. it is a bit long, but I found it very interesting. It may not help, then again, what do you have to loose? It may be this simple to gain back some of your daughters well being. Just wanted to share. S.




Eastern Standard Time
Subj: Fw: Sweet Poison








Think of gum too.


SWEET POISON

In October of 2001, my sister started getting very sick. She had stomach spasms and she was having a hard time getting around. Walking was a major chore. It took everything she had just to get out of bed; she was in so much pain.

By March 2002, she had undergone several tissue and muscle biopsies and was on 24 various prescription medications. The doctors could not determine what was wrong with her. She was in so much pain, and so sick, she just knew she was dying. She put her house, bank accounts, life insurance, etc., in her oldest daughter's name, and made sure that her younger children were to be taken care of.

She also wanted her last hooray, so she planned a trip to Florida (basically in a wheelchair) for March 22nd.

On March 19, I called her to ask how her most recent tests went, and she said they didn't find anything on the test, but they believe she had MS.

I recalled an article a friend of mine e-mailed to me and I asked my sister if she drank diet soda? She told me that she did. As a matter of fact, she was getting ready to crack one open that moment.

I told her not to open it, and to stop drinking the diet soda!


I e-mailed her the article my friend, a lawyer, had sent.

My sister called me within 32 hours after our phone conversation and told me she had stopped drinking the diet soda AN D she could walk! The muscle spasms went away. She said she didn't feel 100% but she sure felt a lot better. She told me she was going to her doctor with this article and would call me when she got home.

Well, she called me, and said her doctor was amazed! He is going to call all of his MS patients to find out if they consumed artificial sweeteners of any kind.

In a nutshell, she was being poisoned by the Aspartame in the diet soda...and literally dying a slow and miserable death.

When she got to Florida March 22, all she had to take was one pill, and that was a pill for the Aspartame poisoning! She is well on her way to a complete recovery. And she is walking! No wheelchair! This article saved her life.

If it says 'SUGAR FREE' on the label; DO NOT EVE N THINK ABOUT IT!

I have spent several days lecturing at the WORLD ENVIRONMENTAL CONFERENCE on 'ASPARTAME,' marketed as 'NutraSweet,' 'Equal,' and 'Spoonful.'

In the keynote address by the EPA, it was announced that in the United States in 2001 there is an epidemic of multiple sclerosis and systemic lupus. It was difficult to determine exactly what toxin was causing this to be rampant.

I stood up and said that I was there to lecture on exactly that subject.

I will explain why Aspartame is so dangerous: When the temperature of this sweetener exceeds 86 degrees F, the wood alcohol in ASPARTAME converts to formaldehyde and then to formic acid, which in turn causes metabolic acidosis. Formic acid is the poison found in the sting of fire ants. The methanol toxicity mimics, among other conditions, multiple sclerosis and systemic lupus. Many people were be being diagnosed in error. Although multiple sclerosis is not a death sentence, Methanol toxicity is!

Systemic lupus has become almost as rampant as multiple sclerosis, especially with Diet Coke and Diet Pepsi drinkers. The victim usually does not
know that the Aspartame is the culprit. He or she continues its use; irritating the lupus to such a degree that it may become a life-threatening condition.
We have seen patients with systemic lupus become asymptotic, once taken off diet sodas.

In cases of those diagnosed with Multiple Sclerosis, most of the symptoms disappear. We've seen many cases where vision loss returned and hearing loss improved markedly.

This also applies to cases of trinities and firma.

During a lecture, I said, 'I f you are using ASPARTAME (NutraSweet, Equal, Spoonful, etc) and you suffer from fibromyalgia symptoms, spasms, shooting, pains, numbness in your legs, cramps, vertigo, dizziness, headaches, tinnitus, joint pain, unexplainable depression, anxiety attacks, slurred speech, blurred vision, or memory loss you probably have ASPARTAME poisoning!'

People were jumping up during the lecture saying, 'I have some of these symptoms. Is it reversible?'

Yes! Yes! Yes! STOP drinking diet sodas and be alert for Aspartame on food labels! Many products are fortified with it! This is a serious problem.
Dr. Espart (one of my speakers) remarked that so many people seem to be symptomatic for MS and during his recent visit to a hospice, a nurse stated that six of her friends, who were heavy Diet Coke addicts, had all been diagnosed with MS. This is beyond coincidence!

Diet soda is NOT a diet product! It is a chemical ly altered, multiple SODIUM (salt) and ASPARTAME containing product that actually makes you crave carbohydrates. It is far more likely to make you GAIN weight!
These products also contain formaldehyde, which stores in the fat cells, particularly in the hips and thighs. Formaldehyde is an absolute toxin and is used primarily to preserve 'tissue specimens.' Many products we use every day contain this chemical but we SHOULD NOT store it IN our body!

Dr. H. J. Roberts stated in his lectures that once free of the 'diet products' and with no significant increase in exercise; his patients lost an average of 19 pounds over a trial period.

Aspartame is especially dangerous for diabetics.
We found that some physicians, who believed that they had a patient with retinopathy, in fact, had symptoms caused by Aspartame.
The Aspartame drives the blood sugar out of control. Thus diabetics may suffer acute memory loss due to the fact that aspartic acid and phenylalanine are NEUROTOXIC when taken without the other amino acids necessary for a good balance.

Treating diabetes is all about BALANCE. Especially with diabetics, the Aspartame passes the blood/brain barrier and it then deteriorates the neurons of the brain; causing various levels of brain damage, seizures, depression, manic depression, panic attacks, uncontrollable anger and rage.

Consumption of Aspartame causes these same symptoms in non-diabetics as well.

Documentation and observation also reveal that thousands of children diagnosed with ADD and ADHD have had complete turn arounds in their behavior when these chemicals have been removed from their diet. So called 'behavior modification prescription drugs' (Ritalin and others) are no longer needed. Truth be told, they were never NEEDED in the first place! Most of these children were being 'poisoned' on a daily basis with the very foods that were 'better for them than sugar.'

It is also suspected that the Aspartame in thousands of pallets of diet Coke and diet Pepsi consumed by men and women fighting in the Gulf War, may be partially to blame for the well-known Gulf War Syndrome.

Dr. Roberts warns that it can cause birth defects, i.e. mental retardation, if taken at the time of conception and during early pregnancy.

Children are especially at risk for neurological disorders and should NEVER be given artificial sweeteners. There are many different case histories to relate of children suffering grand mal seizures and other neurological disturbances talking about a plague of neurological diseases directly caused by the use of this deadly poison.'

Herein lies the problem:

There were Congressional Hearings when Aspartame was included 100 different products and strong objection was made concerning its use. Since this initial hearing, there have been two subsequent hearings, and still nothing has been done. The drug and chemical lobbies have very deep pockets.

Sadly, MONSANTO'S patent on Aspartame has EXPIRED!

There are now over 5,000 products on the market that contain this deadly chemical and the re will be thousands more introduced. Everybody wants a 'piece of the Aspartame pie.' I assure you that MONSANTO, the creator of Aspartame, knows how deadly it is.

And isn't it ironic that MONSANTO funds, among others, the American Diabetes Association, the American Dietetic Association and the Conference of the American College of Physicians?

This has been recently exposed in the New York Times.

These [organizations] cannot criticize any additives or convey their link to MONSANTO because they take money from the food industry and are required to endorse their products.

Senator Howard Metzenbaum wrote and presented a bill that would require label warnings on products containing Aspartame, especially regarding pregnant women, children and infants. The bill would also institute independent studies on the known dangers and the problems existing in the general population regarding seizures, changes in brain chemistry, neurological changes and behavioral symptoms.
The bill was killed.

It is known that the powerful drug and chemical lobbies are responsible for this, letting loose the hounds of disease and death on an unsuspecting and uninformed public. Well, you're Informed now!

YOU HAVE A RIGHT TO KNOW!
Please print this out and/or e-mail to your family and friends.
They have a right to know too.

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M.T.

answers from Charlotte on

What is your daughter's name? I will keep her in my prayers.
M.

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C.

answers from Johnson City on

Hi L.. I'm sorry to say I can't be of any help to you, but just wanted you to know that my thought and prayers and with you and you daughter.

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D.L.

answers from Lexington on

Hello L., I have very mild autoimmune problems, but nothing like your daughter. I do have a daughter, Rachel, who is the apple of my eye! For her to be diminished by disease would be devestating to me. On that level, your grief is very understandable, and touches me. By standing by her and loving her, you are giving her your best. You didn't mention your spiritual status, but I will pray for you. When life is at its harshest, knowing that nothing in this life compares to the wonder of eternal life, is comforting. D.

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C.B.

answers from Knoxville on

Hi L.. I cannot imagine the pain of watching your daughter suffer. I have not dealt with this personally but I do have some information on lupus because I have done research for a friend. I'd be happy to share the info with you.. it is too much to try to type and I have some e-mails I would like to send them to you also. You can reach me by e-mail at ____@____.com and I can send you some info. Or call me at ###-###-####. Then, I can connect you with a lady who had all kinds of auto-immune issues and she shares a lot about what she learned with people who want to hear it. I think I have some info that can help your daughter. Hope to hear from you.
C.

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T.R.

answers from Nashville on

L.,

My sister has lupus too. It was very extreme and miserable. She had days where she couldn't get out of bed and it hurt to touch her. Her husband couldn't hug her or kiss her because she was in such pain. She saw several doctors and it wasn't until she drove to Birmingham, UAB where she got the proper help she needed. When she was first treated for Lupus the doctors gave her no hope. They told her that their was no cure for it and she wouldn't be able to have children. I am pleased to say that the doctor at UAB was God sent. She is now in "remission" and is off of her medication and this summer her and her husband are going to try to get pregnant. It was a long miserable haul for her. It went on for several years. She is now 29 and is doing great. She very rarely has a flare up. However she is on one medication for the rest of her life. If you would like to talk with her I am sure she would be more than willing. You can e-mail me at ____@____.com and I will give you more information. Our prayers go out to you and your daughter. I know it is a long tough road to see the one you love suffer. Just don't give up hope. With my sister there were times where she wanted to give up but praise God she didn't. God will see you thru!

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S.M.

answers from Knoxville on

I know of a natural product with no side effects that can help your daughter it has helped hundreds of others, please call me and we can talk about it, my number is ###-###-####. This is the most remarkable product I have ever seen with the fastest results. It's hard to explain what it is and does online but I would be willing to share my experience on the phone with you. Sheri M
P.S. The product is called Natural Cellular defense, and the second product is called AgarigoldH1X1 These are miracle working products you wont believe how awesome they are, the website is www.mywaiora.com/740801 please call me or email me at ____@____.com and I can tell you more about them, I know without a doubt you will be glad you did.

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L.B.

answers from Greensboro on

Dear L.,

Try reading the book "Inflamation Nation" by Floyd Chilton. Also look at the website www.Feingold.org. Many diseases are caused by our diets and I remember Dr. Chilton referring to Lupus as one of the diseases caused by inflammation due to diet. I had Fibromyalgia and have gotten rid of all my symptoms by changing my diet. I'll pray for your daughter.

L. B.

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A.B.

answers from Charlotte on

Hi L.,

I'm so sorry to hear this about your daughter, and sorry also to hear you sounding so depressed.

I know there is support out there, and I'm so glad you're reaching out for it!

My niece has Lupus, and here is site I often go to for info and/or support. http://www.lupus.org
There is a "community" there.....please explore and see if you find anything to help!

Best of luck to you and your daughter - I'll pray for healing.

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K.P.

answers from Louisville on

HAve you heard about Agarigold?? It is a powerful dietary supplement that has been amazingly helpful to some pretty sick individuals! For more info call my husband at ###-###-####!! What could it hurt!! This may be just what she needs to get feeling better!
K. P

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B.S.

answers from Huntington on

go to www.ucheepines.com
they have a website on things to do for this, click lupus under worksheets.

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