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Prayers please, it's believed that my cousin has Lupus! Advice?

Discussion in 'Family Life - Stories, Pictures & Updates' started by chicken_china_mom, Nov 19, 2010.

  1. chicken_china_mom

    chicken_china_mom Crazy for Cochins

    Apr 24, 2009
    Tab, Indiana
    This has been an extremely rough year for my cousins Ashley and Sean. I asked for prayers last month when their father was diagnosed yet again with cancer, and then had to undergo his 13'th surgery in 15 years to have another mass removed, and then because of all the scar tissue there were serious complications and he nearly died. I was talking to Sean last night when he told me that he hasn't been feeling well lately, he keeps getting sick and suffering flu like symptoms, and a rash on his face. The rash won't go away. So he went to the doctor and the doctor did some blood tests, both of which say he has Lupus. Sean won't admit it, but from the tone of his voice I know he's scared. He's set to go to a Dermatologist on December 2nd. I'm sure the next step after that will be a visit to an immunologist. He's so drained right now, doesn't feel well at all, and now he doesn't want to step out in public, other than to go to work, because of this rash. He's such a beautiful young man too. He'll be 22 the day after Thanksgiving. Due to family problems when he and his sister were little, they came to live with my family for awhile, and for about the first 5 years of his life I practically raised him, and I look at him more like my son than my cousin, and knowing he's in pain and scared, it breaks my heart. I'm asking for prayers for him. He was sure he'd develop cancer before he'd ever develop anything else. Ashley has been having colonoscopies done regularly for about 3 years now (she'll be 26 on December 18th) because the colon cancer their dad has they were told is quite possibly hereditary. Ashley has already inherited her father's arthritis and has it in her spine, hands, elbows, knees, and hips. And she started to go gray at 18 like her dad too. There's just a lot of health problems on their dad's side of the family. Sean worries about what could pop up, but he admitted Lupus was never something he ever suspected he would develop. I'm on pins and needles and will be until he goes to the doctor and finds out for sure. Please keep him and his family in your prayers. I haven't talked to my aunt yet, but I know she's upset. Sean is her baby. Does anyone here live with Lupus? Could you tell me anything that I could pass along to him? He's scared of dying, and I don't blame him. My kids have cousins (first and second cousins to their dad), a mother and both her daughters that had Lupus. The mother lost one daughter before I met them, and about a year or so after I met them, the mother died from complications from the Lupus. But my friend's brother was diagnosed with Lupus about 15 years ago and he's doing fine, so I don't know what causes flares, or how to deal with them, or what Sean should do to stay healthy. He eats pretty good, works out, and is a fit 170 lbs at 5 ft 8. Not an ounce of fat on that boy. Oh, and does getting tattoos have any effect on Lupus? He got one a few months ago, and that coincides with right about when the first symptoms really began to show themselves. Are you born with Lupus? Does it suddenly just occur? Are there triggers? I know NOTHING about that disease other than about the rashes, joint pain, and I believe I read that swollen glands are a symptom, and a feeling of being run down. I know it's autoimmune. And that's about the extent of my knowledge. Any info that I could pass along to him would be much appreciated, thanks. And please keep him in your prayer! He's also complaining of a weird pain in his neck that he sometimes wakes up with, but that doesn't go away like a crick in the neck usually does. Thank you friends!
     
  2. BarkerChickens

    BarkerChickens Microbrewing Chickenologist

    Nov 25, 2007
    High Desert, CA
    I am sorry to hear that! I was diagnosed with Lupus in 2000 (18 at the time and had symptoms since 15), but am in remission now thankfully. Nowadays Lupus had a survival rate of about 99% assuming the person is taking care of themselves. Lupus is where the autoimmune system is overactive, so the body sees everything not natural as a foreign thing that needs to go away (and starts attacking itself). Medication is a catch 22 (as explained to me by my rheumatologist at the time of diagnosis who was a recommended by UCLA for her studies in Lupus, so her opinion is highly valuable in my non-medical-experienced opinion). It alleviates symptoms, but the body freaks out at the foreign chemicals, causing other problems and then more medication....a vicious cycle. Another doctor of mine at the time recommended stopping all medications and eat only natural food (not necessarily organic, but natural....not processed, fake food, but real food like rice, veggies, etc). It was tough at first, but within several months I was feeling amazingly better. I was getting blood tests every 3 months by my rheumatologist and every blood test was getting worse and worse until I tried the no meds/eat really healthy (hence the immune sytem can stop attacking me and hopefully go into remission). Then all of sudden, my blood tests got better until I had all normal levels and I was in remission. Not sure if it worked for others with Lupus as I don't know many with Lupus to begin with (let alone tried what I did), but it worked for me! Maybe it was just lucky, but I can't argue with blood tests, so I can say it wasn't a placebo effect.

    As for tattoos, in itself, no not a problem. But, during a flare-up of lupus, the immune system freaks out and starts attacking itself. So, in that sense, yes, the tattoos could have caused the flare-up to worsen. Stress is also a HUGE cause of flare-ups with lupus.

    You are not necessarily born with Lupus, but generally people with lupus have the genes for it. It is genetic. It is generally triggered by something environmental, whether it be stress, etc., but the exact details are still unknown. Additional triggers are likely as well since the person is already a carrier genetically. It has many symptoms that some people get and others don't. For example, I have never had the rash. My cousin's, aunts and I have all had joint pain and fatigue, but never the rash. One cousin and I both have had circulation problems in the legs that cause sharp pains and numbness. I put on a lot of weight due to fatigue and inactivity from the pain (I was eating crappy before, but was active to burn it off, so eating the some and inactivity was a BAD combo). Fibromyalgia is a common secondary condition to Lupus as well. There are generally 11 criteria for Lupus, which requires 4 to be present for a diagnosis. Photosensitivity is common as well, but like the rest, not a must. I still feel sick if I am in the sun too much (regardless of weather, hydration, shade, etc). High levels an antinuclear antibodies (the antibodies that go around attacking everything) is common in 95% of people with Lupus.

    If he takes good care of himself, eating naturally, exercising, etc., then the bodies immune system has less to "complain" about and he will have less symptoms and less damage. Organ issues (kidneys, etc) aren't too common with people who take care of their health and see their doctor regularly.

    I may sound "hippie" for pushing the eat healthy thing, but it made total sense to me. I had trouble walking and the doctor wanted to put me on low-dose chemo to suppress my immune system and plaquinel (spelling?? ...has a side-effect of blindness) for other symptoms. I was terrified of those and that is why I sought an alternative opinion for treatment. I was still seeing my rheumatologist at the time and she couldn't argue that it was working for me. It is MUCH easier to identify triggers of flare-ups and prevent them from being full-blown flare-ups, then it is to try to stop a flare-up that has already gone out of control.
     
    Last edited: Nov 19, 2010
  3. BirdBrain

    BirdBrain Prefers Frozen Tail Feathers

    May 7, 2007
    Alaska
    What BC said...

    Standard fare for treatment of these diseases are what we call DMARDs...Disease Modifying Anti Rheumatic Drugs. Among these are some pretty heavy weight drugs. Plaquenil, methotrexate, thalidomide, with a healthy serving of high dose steroids to round it out. Not really what I would go for right off. Try going COMPLETELY unprocessed and natural and see how that goes. He might even try going gluten free for a few weeks as well to see if that might be a contributor. Lupus is doable. Reassure him and get information.
     
  4. chicken_china_mom

    chicken_china_mom Crazy for Cochins

    Apr 24, 2009
    Tab, Indiana
    Oh thank you Shelby, you provided so much information and I will try to call him tomorrow and pass that information along to him. He' scared right now, and I think what scares him is the possibility that this could kill him. If he wasn't under stress before, he is now.

    I'm wondering who's side of the family exactly that he could have inherited this from. On his father's side they have arthritis and cancer as well as premature graying. But I don't know what else they have. On our side of the family, lets see, we have another cousin that was diagnosed with Fibromyalgia, and Sean's mother can't be in the sun, but we were always told that it's because it triggers her shingles. I understood it that shingles usually manifests itself on the torso and can cover large areas of the torso, but his mother breaks out on her face, and the more sun she experiences, the worse it is. She had it so severe about 8 years or so ago that it looked like someone had taken her and dragged her entire face across the ground. The only place she didn't break out was the sides of her cheeks, her lips, and her jaw. She broke out across her entire forehead, her cheeks, and down her nose. She was in miserable pain. She's not suppose to be in the sun for long, it makes her sick. I suffered a heat stroke when I was pregnant with my older DD and haven't been able to tolerate the heat or sun very well at all ever since. It just makes me wonder where that gene for it comes from. I'm worried about when he has kids. If he passes that gene along, it will devastate him to pass that to his kids. Should I suggest he go to a rheumatologist? Is it more prone in one nationality than another? All the people I know with it are Puerto Rican. My cousin is half Irish (our side of the family), and half Mexican (his dad's side). Are people of Latin countries more prone? I can't wait to talk to him again and tell him. Found out that apparently Autism runs on our side of the family too. My mother, my older DD and myself all have Asperger's to one degree or another, and my younger DD has some related symptoms, like OCD and ODD. But I'd take Autism any day over something that is potentially life threatening. I'm going to do some research on Lupus in a couple days when I have the time to do it and see what else I can dig up. I know he'll be glad to know that there is someone out there that has been through it and gone into remission. All these diseases are so scary! I worry about him, he's such a great kid (yeah, kid and he's gonna be 22 next week, lol, like I'm THAT much older than him at 35!) I can't wait to pass the info you shared to him. I'll post what his Dermatologist says. Though why they sent him to a Dermo, I have no idea. These are stressful, stressful times. [​IMG]
     
  5. BarkerChickens

    BarkerChickens Microbrewing Chickenologist

    Nov 25, 2007
    High Desert, CA
    My brother has autism...completely unrelated to lupus, but ironic that it runs in our family as well. BirdBrain is right about trying to the gluten-free diet as well. Gluten is a common allergy that, I believe has been linked to an autoimmune function of some sort. My brother is gluten sensitive, but he was told that it is common in people with autism. I was tested for gluten sensitivity and I am fine, but it has worked for others. (A gluten sensitivity is essentially an allergic reaction, which is just one more trigger for the autoimmune system to get upset).
     
  6. Sierra pachie bars

    Sierra pachie bars Queen of the Lost

    Nov 8, 2008
    I was told by two doctors that testing showed my at the time 9 year old daughter had Lupus. In fact doctors were sure of it because she had body pains and sores in her mouth and was not sleeping and having stomache issues. After taking her to childrens hospital because we wanted the best doctors sinche my daughter is my baby and I wanted the best of the best.
    Later the doctors gave her a diagnosis of FMS. She doesn't have all the lupus markers. She has some of them, and does have autoimmune. Which they call ANA postive.
    So at anytime her body could go the MS,Lupus or any autoimmune. She gets sick really easy. Takes longer to recover. Also I had to pull her from public school because her migrains were not controled. When dealing with anyone who has any type of illness like Lupus , FMS, MS family needs to be there. Support is key !! Also friends and family also need support because watching a loved one suffer so badly at times is hard on everyone.
     
  7. chicken_china_mom

    chicken_china_mom Crazy for Cochins

    Apr 24, 2009
    Tab, Indiana
    Quote:I am actually noticing more and more of diseases like autism and Lupus popping up with each passing year. More more people are being diagnosed with depression, as well as a variety of other conditions. If you had asked me 10 years ago if I knew anybody that suffer from depression, I would've said 2, a childhood friend who was diagnosed at the age of 15 with bipolar, and myself. But today, I have more friends on medication for depression that I have that aren't taking medication. And as for autism? My kids have an aunt on their father side who has two sons, both with autism. Their other aunt's grandson has been diagnosed with autism, and now here we are finding out that it runs on my side family too. I'm honestly wondering how much have our diets changed in the last hundred years that we are causing our own bodies to attack ourselves just by what we eat. I know firsthand the hell that comes from living with skin, food, and nasal allergies. And my older daughter's allergies are even more severe than mine. My younger daughter has skin and nasal allergies as well, and has had one food allergy reaction, but she is battling OCD and ODD, both of which have been linked to Aspergers. So it doesn't really surprise me that I know four people with lupus, and now possibly a fifth if my cousin is definitively diagnosed with it. 10 years ago I didn't know anybody with lupus. It seems that now I know more people that are sick that I do people that are not sick. Granted I don't have lupus, but I think a diet changes in order for my kids, my mother, and myself, just because I think we need to eat healthier. I've tried to eliminate a lot of the bad foods, but some things just taste so good! I have heard that gluten allergies have been linked to autism and other disorders. And it seems that the more they mess with the crops to make faster growing corn or wheat, or soybeans with five bean pods, the sicker we get. Has anyone else noticed this? I'm going to have to ask my cousin exactly what his diet is like, and how much fast food he takes in. He won't like it if he has to give up alcohol, but I think that for his own health, if he is to avoid gluten, then he should probably eliminate beer and other wheat-based alcohol from his diet. Too bad they live in a house in Chicago with a backyard that's smaller than my bedroom, otherwise I would tell them to start growing their own crops. If I lived closer to him I would grow extra just for him. Heck, I would even grow a few extra chickens and feed them organically just he could have healthy meat to eat.

    So the consensus seems to be that he should eat as many natural foods as possible, and avoid medications. Are there external factors that he should avoid as well? Should I suggest organic soaps, shampoos, lotions, etc.? What about colones? The more information that I can give him, the better. I'm also going to contact my friend Miguel as his brother Junior has been battling lupus for about 15 to 20 years now. I'm hoping he can ask Junior how he prevents flareups. Just want to gather as much information as absolutely possible. Thank you all for the advice you have given, I truly appreciate it. Keep Sean in your prayers. Thank you.
     
  8. BarkerChickens

    BarkerChickens Microbrewing Chickenologist

    Nov 25, 2007
    High Desert, CA
    I absolutely agree that many epidemics today seem to be from poor diets. We have so many unhealthy things added to food nowadays. Heck, they add benzene and toluene to many foods as a preservative (benzene and toluene are just two toxic constituents in petroleum hydrocarbons...for those that have heard BTEX before, it stands for benzene, toluene, ethylbenzene and xylenes).

    As for gluten sensitivity, first, he can either be tested for it or cut out gluten for a couple weeks and see if he feels any different. He may find out that he is fine with gluten (my mom and brother are both gluten sensitive, but I am not). As for beer and alcohol, not all alcohol is made from grains with gluten, but unfortunately, most alcohols are. Beer is definitely made with wheat, but a couple companies have gotten brilliant and started making gluten-free beer. If he finds that he is gluten sensitive, he may want to look into BevMo or some of the other large retailers to see if they carry (or ship) gluten-free beer.
     
  9. AngieChick

    AngieChick Poultry Elitist

    I am so sorry that your family is going through this. But know that Lupus is a treatable disease and the survival rates have massively improved. Your cousin was given a life changing diagnosis, and it's important to recognize that. However, it doesn't have to define who he is.


    All of the autoimmune disorders are fairly tricky to diagnose. The fact that we are seeing more cases probably has a lot to do with the fact that we are better at diagnosing it. This is also true of Autism.

    I have a child on the Autism Spectrum. I have always been very aware of what I fed myself during pregnancy and what my children ate. However, autism does run in my family and it's therefor not surprising that I have a child on the Spectrum. Sometimes there are cases where a child does have a food allergy or is malnourished and it presents itself as Autism does, but it is not truly Autism, it's just that it's showing the same symptoms. There is no blood test to test for Autism, so it's tricky to diagnose accurately.

    My husband has an autoimmune disorder, but his parents were hippies and his nutrition was fantastic growing up, as it is now. His father has psoariasis, and his sister has graves disease, so there is a definite genetic link.

    When my sister in law was diagnosed with graves, she was losing 2 pounds a week. She is 5'6" and weighed under 100lbs when she was finally diagnosed. The medications saved her life. She has been in remission since then, for over 11 years. If she had tried to control it just through dietary changes she would have been dead at 24 and left 2 babies, it came on very quickly and had a huge impact on her body.

    At 29, my husband was losing the ability to walk and had skin lesions cropping up all over the place. He was finally diagnosed with psoariac arthritis, which is also an autoimmune disorder. His knee joints were breaking down. Methotrexate is what he ended up taking, and it kept him out of a wheelchair. It's a nasty drug and had side effects, but the disease was much worse. While we were going through the process I had people recommend to me that he eat this or that, or cut out whatever they deemed to be a culprit, or just take this amazing vitamin and it will all be okay. However, when it's something like my husband's knee joints liquefying, I don't mess around. He took what worked and kicked it into remission before getting back off of it. The scales came back, but he hasn't had joint pain since, it's been 10 years.

    All autoimmune disorders are related, they just manifest themselves differently. But they all seem to have cyclical flare ups. Stress is a major factor, so anything to reduce stress can be helpful (exercise, eating right, etc.). But, if he has Lupus and avoids medications that can help it may or may not go into remission by itself (it's cyclical), but is it worth the risk?

    I don't think western medication is perfect, and some of the drugs' impacts are horrid. But, there comes a time when you need to stick with what has been clinically tested and proven effective, simply because the consequences of not are just too high.
     
  10. dawg53

    dawg53 Humble

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    Nov 27, 2008
    Jacksonville, Florida
    BarkerChickens, your post #2...well stated and very true. My wife has scleroderma and it's basically in the same family as the other autoimmune diseases like lupus. Some of the meds my wife takes are breaking down her immune system and causing her to be suseptable to bacterial, fungal and/or viral problems that a normal, healthy person wouldnt have any issues. This past 2 weeks she had a relapse regarding severe acid reflux and intense nausea requiring an emergency room visit and of course...more doctor vists afterwards and more meds to counteract the unwanted bacterial infection she picked up because of her weak immune system. To break the cycle and with her rheumatologists advice, the 2 main drugs causing her immunity breakdown came to a complete stop and we're starting the natural route as well, this didnt make another one her doctors a happy camper though. Too bad, he can discuss it with her rheumatologist. We stopped at a health food store and picked up a jug of aloe vera juice (not cheap) as recommended and getting probiotics as well as cooking bland foods, to get my wife back on an even keel like she was before all this started. Her bloodwork has been normal with only her muscle enzymes being elevated, but we're working on that with natural foods. We'll see how it goes in early January with her next rheumatology appointment and bloodwork. That was an excellent explanation how autoimmune diseases work, how they affect and attack different parts of the body with little or no warning. Unfortunately, doctors can treat only symptoms since there's no cure. We're learning that treatments arnt necessrilly the correct way to go, as you've discovered. Again, thank you for the the explanation how these diseases work for the uninformed. I wish you the best.
    chicken_china_mom....prayers sent to Sean.
     
    Last edited: Nov 21, 2010

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