Guest guest Posted February 13, 2001 Report Share Posted February 13, 2001 There is a book called MS Something Can Be Done and You Can Do IT by Dr. Soll, M.D.(a neurologist in Iowa) and Penelope Grenoble, PhD. This book motivated a friend of mine with Lupus to get IgG4 Food allergy testing done. Now she is symptom free except when she cheats on her diet. (Strangely, when she asked to mention it at the Lupus Support Group at the Dakota Hospital in Fargo, she was forbidden as it was not an accepted protocol and would give sufferers false hope. This was 10 years ago.) The theory is that the two culprits in inflammatory disease are the most common things that inflame: Viral infections and Allergies. The most common type of food allergy to manage is common foods. Not IgE but rather IgG4. Contact Great Smokies for Excellent Reference material or look on their website: Great Smokies Diagnostic Laboratory 63 Zillicoa Street, Asheville, NC 28801 Toll Free: (800) 522-4762; Fax (828) 252-9303 Internet: http://www.gsdl.com Abrahamson, D.C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2002 Report Share Posted February 27, 2002 Has Maddie's immunologist looked at her IgG subclasses. I wonder if she is a true IgA and not common variable. A high sed rate is indicative of inflammation. It is not unusual for immune deficient children to have swelling in joints and arthritic like symptoms such as polyartheritis which is redness, swelling, pain in the joints, the reddened areas are hot to the touch. Just an FYI. Lynne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2002 Report Share Posted February 27, 2002 Has Maddie's immunologist looked at her IgG subclasses. I wonder if she is a true IgA and not common variable. A high sed rate is indicative of inflammation. It is not unusual for immune deficient children to have swelling in joints and arthritic like symptoms such as polyartheritis which is redness, swelling, pain in the joints, the reddened areas are hot to the touch. Just an FYI. Lynne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2002 Report Share Posted February 28, 2002 Hi Becky === I'm sorry I don't know the full history but I see Maddie is IGA deficient. So is Kaylin. I've never seen a child sleep so much. Maddie does this as well?? Kaylin went to sleep at 10PM the other night and I " HAD " to wake her at 1:30 the next afternoon. To which she still didn't want to awaken and she went to bed at 7:30 that night. I wish I could get half that sleep but this is really a concern to me. Yes Kaylin is at puberty but this seems like an awful lot of sleep. She is 11, thinks she is about 22. But I guess most girls at this age think that. Lupus Last year they thought that Maddie might have lupus. Understand that it is VERY rare in children. Beyond the sed rate test is a test for ANA. No clue what it is but it is either positive or negative. Lupus patients all have positive ANA, but not all people with positive ANA have lupus. We were sent to a rheumatologist when we were going through that with Maddie. She also did an anti DNA test of some type and that told her that for now, Maddie does not have lupus. However, she is at higher risk for it than other people. Do not know why that is, but that is what we were told. Our doctor also told us that children with immunolgical probelms have many of the same symptoms of lupus, but do not have lupus. Maddies ENT and reg. ped are still not convinced about her not having the lupus as the sed rate continues to be out of whack. The odds we were given of Maddie-at age 5- of actually having lupus were 0 in 100,000. It is much more common in ad Just a little of what I learned and remembered from last spring. Maddie wanted to go back to school today and since there had been no fever since Monday, I consented. I stayed in the school, a good thing because about an hour and a half into the morning-which we were late for to start with, she was wiped out. Spent the rest of the afternoon on the couch or my lap. We are going to try for the 2nd half of the morning tomorrow. The doctor already told me he would right a letter for altered school schedule for her if necessary. I think he finally realizes that not all pid kids are the same. he told me he has 2 others with IgA def. in his practice and they are not nearly as sick as Maddie is and after the bout of mono he knows she is different-DUH! I should be glad we have him-he took her on just as all of this was diagnosed and he is very good and deals well with all of the sugar problems we have. He is also always on time or early-and that is worth it to me! Thanks for all of the prayers and well wishes. Hope the above info helps! Becky in IN-mom to Maddie the mono monster!Get more from the Web. FREE MSN Explorer download : http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2002 Report Share Posted March 1, 2002 Autumn comes home every night from preschool completely wiped out--sick or well. She's always asking to go to bed at 6 p.m. Usually, she ends up staying awake until 8 because she'll get interested in a game or something with her big sister. Since she's only 4, I think she's ignoring her body's need for sleep. I try to get her to rest as much as possible during the evenings & the preschool knows to let Autumn have extra rest & nap time if she needs it (most days she's the last one awake at nap). As Autumn gets older, I expect she'll act like most older PID children & want to sleep much more. Ray, mother to Tabitha (age 6), Autumn, age 4 (IgG def., asthma, chronic sinusitis, and allergies), and Duncan (9 months) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2002 Report Share Posted March 1, 2002 Autumn comes home every night from preschool completely wiped out--sick or well. She's always asking to go to bed at 6 p.m. Usually, she ends up staying awake until 8 because she'll get interested in a game or something with her big sister. Since she's only 4, I think she's ignoring her body's need for sleep. I try to get her to rest as much as possible during the evenings & the preschool knows to let Autumn have extra rest & nap time if she needs it (most days she's the last one awake at nap). As Autumn gets older, I expect she'll act like most older PID children & want to sleep much more. Ray, mother to Tabitha (age 6), Autumn, age 4 (IgG def., asthma, chronic sinusitis, and allergies), and Duncan (9 months) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2002 Report Share Posted November 3, 2002 Speaking of genetic link for AIH, I have an interesting story. Of course it is said that the predisposition to autoimmune disease in general is hereditary, but not really a specific disease. Well, I was diagnosed about one year ago with AIH. After researching the disease my mom called me up and told me that my dad's mom had died from liver failure (which I knew), but they really didn't know the cause of it. She never drank, but had severe cirrhosis, ascites, etc. They did an autopsy and found what they called a " strange " pattern of scar tissue. This was in the very early 1970s. My gastro has discussed this with me and thinks that she very well may have died from an untreated case of AIH. Interesting, huh? Could be just a coincidence, but there also may be a stronger genetic link than they think. Of course, there are people with Lupus in my family, too, and my other grandmother has Sjogren's....I have it coming from both sides! > Jerry probably has already found this since he does so much research for > us, but my local paper this morning had an article about finding a gene > linked to lupus. Apparently they think at least Lupus is genetically > linked, so I would think there is a strong possibility that AIH is as well. > Here is a site with a little bit of info on it: > http://www.nature.com/cgi-taf/DynaPage.taf? file=/ng/journal/vaop/ncurrent/ab > s/ng1020.html & dynoptions=doi1036345478 > > nne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2002 Report Share Posted November 4, 2002 Absolutely! Your poor little grandson. It is so sad to hear of this at such a young age, my heart really goes out to him. There is so much research these days, the stem cell research looks very promising for autoimmune diseases so who knows what may be around the corner in terms of cures! Thanks for all the support, guys. > , > I also have several autoimmune diseases including Lupus and AIH. My > Mom had PBC which is also autoimmune. My poor grandson age 6 now has > Rhuematoid Arthritis which is also autoimmune. There is definitely a > genetic link. I hope they find a cure soon! > > Rose Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2002 Report Share Posted November 19, 2002 In a message dated 19/11/02 10:50:20 PM Central Standard Time, michelle-mk@... writes: http://medlib.med.utah.edu/WebPath/IMMHTML/IMM009.html Thanks so much I don't think that is what it is. I pray it's not. Lori ('s Mom) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2002 Report Share Posted November 19, 2002 Lori, I found a couple of websites that show what the butterfly rash looks like. Links are below, I hope this helps. http://www.medstudents.com.br/image/reumat/imagerh6.htm http://medlib.med.utah.edu/WebPath/IMMHTML/IMM009.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2002 Report Share Posted November 20, 2002 Dear Laurie, My lupus rash started on my upper chest and upper arms, to my back and on the topside of my legs and then finally to the face! I would suggest that any rash she gets should be looked at very quickly just in case is an allergy or even if it's lupus, so it can be dealt with right away. Let us know what you find out. Amy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2002 Report Share Posted November 21, 2002 - Thanks so much for the website links - I think! I went to the sight to see them and about fell out of my chair! I had heard of the 'butterfly rashes' many times, but had never seen them. Both images were just like the rashes I get on my face. I just figured I was having skin problems from all of the treatment or the disease. I get mine across the cheeks like the one under the eyes, albiet not quite as large as the lady pictured. The other image showed welts on her face like I get - also not as many, but very obvious. I can't hide either with make up. Well there is another thing to add to my question list for the doc next month. I still think it is just the meds/disease, but it doesn't hurt to ask. Carole > Lori, I found a couple of websites that show what the butterfly rash > looks like. Links are below, I hope this helps. > > http://www.medstudents.com.br/image/reumat/imagerh6.htm > http://medlib.med.utah.edu/WebPath/IMMHTML/IMM009.html > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2003 Report Share Posted August 11, 2003 I am not sure if this will help but I hope it can help some. It is the link to the american lupus association http://www.lupus.org/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2003 Report Share Posted August 12, 2003 Diane, don't have much time now but lupus is an autoimmune disease that can attack anything in the body. Most typically it causes joint pain, fatigue, and skin rashes. It typically responds well to steriods and plaquenil (a maleria drug) but it takes 3 to 6 months to get the full benefit from plaquenil. Imuran and other immunosuppressants are also often used for lupus. The most common organ attacked by lupus is the kidneys but it can attack any organ in the body. I was diagnosed with systemic lupus in Oct 96. It was my first of at least 3 autoimmune diseases. I am one of the lucky ones as my lupus has been relatively mild. I have no kidney or organ involvement that we know of unless lupus really is the cause of my pancreatitis. Lupus does not cause autoimmune hepatitis (AIH) but once you have one autoimmune disease you are much more likely to get another. My daughter is only 21 and already has 3 autoimmune diseases, although at this time the rheumatologist does not think she has lupus. Hopefully now that they know what is going on with Gene they can do something to slow the damage. He is in my prayers. W Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2003 Report Share Posted August 12, 2003 wow Dianne, Lupus is another autoimmune disease where the body attacks different parts of the body. There are two kinds of lupus...systemic and discoid. The systemic generally latches on to one major organ, ie, lungs, kidney, etc. Discoid just often, I think, attacks the skin. The process is just like AIH....steroids etc. Lupus can be fatal, but so can AIH. OFten AIH goes along with other autoimmune diseases, like Celiac, Lupus, thyroid, etc. I hope they get your husband stable now that they know what is going on. I have a dear friend with Lupus that has attacked her lungs, another with another friend that it attacking her liver, another the joints, etc. At one point, the doctor thought I had Drug induced Lupus...from one of the meds I took for my skin conditions. Anyway, I hope things go better with Gene today! Debby [ ] lupus Someone tell me what is Lupus.........Gene is in ICU and bleeding from the lung...tested positive for Lupus.........They have him on steriods now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2004 Report Share Posted March 30, 2004 Max, I can't give you a testimonial but I use to know someone with lupus (O type) that was getting much better by following the diet. However we lost contact. On another note: I'd talk her into a fairly high dose of IMM CALM. ABO Specifics Inc. - http://www.foodforyourblood.com Lupus Have a friend who may have skin lupus and I'm trying to get her to go on the diet since it is an autoimmune system disorder (I think). Anyone out there had this or have a nice testimonial I can use on her? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2004 Report Share Posted March 30, 2004 Hi, Max! I have celiac and sub to the Celiac List. We get a lot of messages from people with other auto-immune system problems, like Lupus, Diabetes1, Hashimoto's (thyroid), Sjogren's, etc. Many of these people have been helped by a gluten-free diet. Gluten is a protein fraction found in wheat, rye, barley, and possibly oats. I hope your friend will give a GF diet a try, say six weeks. If she can avoid wheat, which seems to be in nearly every processed food, she should feel much better very quickly if gluten intolerance is the problem. She just has to prepare foods very simply and give bread a rest. The drawback to this is that if she actually has celiac, she should be tested for it before she goes GF, or the biopsy may never be reliable. Right now, the biopsy is considered the gold standard, but there are other tests--genetic, stool, etc.--that are also useful. I take it she does not have a medical diagnosis of lupus. If she wants a do-it-yourself diagnosis, forget about the biopsy. Just go on the GF diet and see if she feels better and if her skin looks better in a couple of weeks. Then she can tell herself it is worth it to stay on the diet. I hope that info doesn't scare her away. Having celiac and continuing to eat gluten leads to a 300% greater chance of developing non-Hodgkin's lymphoma. It's that thought that keeps me on the straight and narrow when I go to parties with yummy-looking cakes and cookies. LOL. That comes up because genes for the auto-immune conditions seem to cluster closely on the same chromosome, and many people have two or three or more of them at the same time. Jane Tucson, AZ USA At 10:07 PM 3/30/04 -0500, you wrote: >Have a friend who may have skin lupus and I'm trying to get her to go on the >diet since it is an autoimmune system disorder (I think). Anyone out there >had this or have a nice testimonial I can use on her? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2005 Report Share Posted May 3, 2005 Hi Adam and other Londoners with ReA, I plan to be in the London area this June and was hoping to see a Rheumatologist there. I am hoping to find one who specializes in ReA and AS. Any recommendations? Adam, I am sorry to hear of your suffering. I will keep you in my prayers. I have a butterfly type rash on my R cheek sometimes. My dermatologist thought it might be Lupus but my Rheumatologist said it is part of my ReA. Thanks, in CA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2005 Report Share Posted May 4, 2005 Adam, fwiw, I was diagnosed with lupus several years prior to my diagnosis of RS/ReA, and before my diagnosis of FMF (familial mediterranean fever)....now, in my fmf group it has been discovered that several of us get the classic " butterfly " rash during a flare that is supposed to be not seen anywhere but in lupus. The only thing I can deduce for sure is that the symptom is not the final word as far as lupus goes. fwiw, I also had the ana test which indicated lupus as well...and so have many of the fmfers. However, of all the diagnoses I've had (and there are regretfully many more) over the years, lupus would be the one I had the fewest symptoms of and never really believed was true. Hope they narrow it down for you as the worst part of anything is not knowing. Susie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2005 Report Share Posted May 12, 2005 Thank you so much Sandy, I will look into the Gerson therapy, and I would like to get some book to read I think will be better for me to have something on hands to read, do you recommend any book? I thought Dr. will be a good one. Thanks again. Debbie Porter Re: Lupus Hi Debbie Gar Hildebrand who was associated at one time with the Gerson Institute (or whatever they called themselves at the time) cured himself of Lupus with the Gerson therapy. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2006 Report Share Posted April 26, 2006 Dr. Alistair Labauch-Bourne has one on his Protocol CD. Check with Kelsey.......... Lupus Does anyone have a protocol for Lupus? Thank you! ............................................. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2006 Report Share Posted May 4, 2006 We also have them available. Yours in Health, Dr. Kathy Lupus > > > Does anyone have a protocol for Lupus? Thank you! > > > > > > > > ............................................ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2006 Report Share Posted October 1, 2006 Hi , I was diagnosed with lupus, and a few other things such as MS an psychosis... Oh Brother! Your freind appears to be a classic case of lyme. She can ask her MD to test her through MDL Labs for lyme. Most carriers pay for it. It will give her a good indication as to whether she chooses to follow up on it. The redness of the skin can be caused by erhliciosis, as for the other symptoms they also fit a lyme diagnosis as well. Tell your friend that if she does have lyme the steriods are highly contraindicated. Print out or email her Dr Burrascanos treatment guidelines and let her judge for herself. If she chooses to do so you may have saved her life... Just my opinion, Let me know if you need a link to the guidelines. Or if I can be of any help. Blessings to you for being so caring. Best Regards, Sudylo RN/CHT Basking Ridge, NJ About Get Directions on my Homepage http://www.geocities.com/boejr1/classic_teal.html > > Anyone here misdiagnosed with Lupus? or have both Lyme and Lupus? > > I ran into an old friend who has been diagnosed with Lupus (decades ago), and fibromyalgia. She is frequently put on steroids for the lupus, and feels just awful while ramping up, but then feels better once she steps them down to maintenance level. > > She is going to ask her doctor for a CD-57. But feeling better while on steroids seems un-Lyme-like. Any insight? I'm just wondering whether to encourage her down the LLMD road, knowing it will be expensive and possibly not relevant. She had to quit working a few years ago, and money, as we all know, can be tight. > > Her symptoms seem to be mostly pain, rheumatoid arthritis, blood clots and extreme fatigue, with the typical Lupus reddening of the skin. If anyone here has personal experience with this diagnosis, I can pass it along, and it might be helpful to her. > > Many Thanks, > > > > > --------------------------------- > Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+ countries) for 2¢/min or less. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2006 Report Share Posted October 1, 2006 Lupus test was positive although the doctor told us everything was normal. I was not aware of this until I got a copy of the medical records. This was a doctor we only went to once considering he does not believe we have Lyme in this area. He told my husband " the symptoms are all in your head " , so we never went back. Diagnosed with chronic Lyme 2 weeks later. anitia > > Anyone here misdiagnosed with Lupus? or have both Lyme and Lupus? > > I ran into an old friend who has been diagnosed with Lupus (decades ago), and fibromyalgia. She is frequently put on steroids for the lupus, and feels just awful while ramping up, but then feels better once she steps them down to maintenance level. > > She is going to ask her doctor for a CD-57. But feeling better while on steroids seems un-Lyme-like. Any insight? I'm just wondering whether to encourage her down the LLMD road, knowing it will be expensive and possibly not relevant. She had to quit working a few years ago, and money, as we all know, can be tight. > > Her symptoms seem to be mostly pain, rheumatoid arthritis, blood clots and extreme fatigue, with the typical Lupus reddening of the skin. If anyone here has personal experience with this diagnosis, I can pass it along, and it might be helpful to her. > > Many Thanks, > > > > > --------------------------------- > Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+ countries) for 2¢/min or less. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2006 Report Share Posted October 1, 2006 there is a site called the marshal protocol that will be able to help her...lyme and lupus do cross but the causative orginism is differant...this is a site with people and researchers who know what they are talking about and it works for lyme as well.... eric DeMarco <ponyrubs@...> wrote: Anyone here misdiagnosed with Lupus? or have both Lyme and Lupus? I ran into an old friend who has been diagnosed with Lupus (decades ago), and fibromyalgia. She is frequently put on steroids for the lupus, and feels just awful while ramping up, but then feels better once she steps them down to maintenance level. She is going to ask her doctor for a CD-57. But feeling better while on steroids seems un-Lyme-like. Any insight? I'm just wondering whether to encourage her down the LLMD road, knowing it will be expensive and possibly not relevant. She had to quit working a few years ago, and money, as we all know, can be tight. Her symptoms seem to be mostly pain, rheumatoid arthritis, blood clots and extreme fatigue, with the typical Lupus reddening of the skin. If anyone here has personal experience with this diagnosis, I can pass it along, and it might be helpful to her. Many Thanks, --------------------------------- Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+ countries) for 2¢/min or less. Quote Link to comment Share on other sites More sharing options...
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