Guest guest Posted October 1, 2006 Report Share Posted October 1, 2006 Thank you very much. I'll pass this along. husbandwcld <husbandwcld@...> wrote: 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 --------------------------------- Talk is cheap. Use Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2006 Report Share Posted October 1, 2006 Thanks, , The thing that gave me pause was that she does seem to do better on steroids, and that didn't seem to fit. She is not an outdoors person - never has been, and has never seen a tick. But she did have a cat a long while back. She also had a VERY BAD cat scratch - was attacked by a cat and ended up with severe lacerations requiring sutures and antibiotic therapy while 6 months pregnant. This was about 13 years ago. So, there are many things that may be going on. I hope her doc agrees to the CD-57. I'll mention MDL. I have Burrascano's guidelines, and occasionally hand them out to clients. I'm gonna get myself fired one of these days (I do massage therapy at a wellness ceter connected to a hospital). But if it saves one Lymie, it's worth it. I see a LOT of chronic pain people, and if I can't resolve their issues in one or two sessions, I start asking the Lyme questions. Thank you for the info. Sudylo RN / CHT <boejr1@...> wrote: 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 --------------------------------- Get your own web address for just $1.99/1st yr. We'll help. Small Business. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2006 Report Share Posted October 1, 2006 Although my rheum checks me twice a year for lupus, I'm always negative. (I have red lesions that show up on my skin I've caught her staring at them; she's never mentioned lupus to me-- I just look up what tests she orderes) I was extremely positive on Lyme tests (by CDC also)and I have been on steroids three times since diagnosis, once for a seriously pinched nerve and twice for severe allergies and hives. I have always felt better on them! Not that my pain and brain fog are better, but I do have so much more energy and the nausea is non-existent at those times. Also, my docs don't know enough about Lyme to know about the contraindication. > > Thanks, , > > The thing that gave me pause was that she does seem to do better on steroids, and that didn't seem to fit. She is not an outdoors person - never has been, and has never seen a tick. But she did have a cat a long while back. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2006 Report Share Posted October 1, 2006 Wondering what you mean that the lupus test was positive? It's my understanding that there is no definitive test for lupus. (Initially, the docs thought my daughter might have lupus, so we've been down this road.) I think certain test results are suggestive of lupus--beyond that, it's really a clinical diagnosis. There's a list of I believe 9 symptoms. The docs say if you have five of the nine, you're considered to have lupus. My daughter had four. (But these are the same " experts " who wouldn't even consider the possibility of lyme, though as I recall, most of the nine symptoms would fit lyme too.) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2006 Report Share Posted October 1, 2006 Thank you, - that is really useful information. She also reports a big increase in energy with the steroids, once she gets past the ramping up period. OK - I'll refer her to my LLMD. transmedic007 <vendetta33@...> wrote: Although my rheum checks me twice a year for lupus, I'm always negative. (I have red lesions that show up on my skin I've caught her staring at them; she's never mentioned lupus to me-- I just look up what tests she orderes) I was extremely positive on Lyme tests (by CDC also)and I have been on steroids three times since diagnosis, once for a seriously pinched nerve and twice for severe allergies and hives. I have always felt better on them! Not that my pain and brain fog are better, but I do have so much more energy and the nausea is non-existent at those times. Also, my docs don't know enough about Lyme to know about the contraindication. > > Thanks, , > > The thing that gave me pause was that she does seem to do better on steroids, and that didn't seem to fit. She is not an outdoors person - never has been, and has never seen a tick. But she did have a cat a long while back. > --------------------------------- 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 You know, I just can't recommend a protocol that is so secretive. I want to know what will be expected down the line before I risk starting down a path I might rather not be on. I wish all the best to anyone who chooses this path. If I could " look before I buy, " I might go there too. eric schulman <eric_s11050@...> wrote: 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 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...
Guest guest Posted October 1, 2006 Report Share Posted October 1, 2006 get tested for mycoplasmas. At 08:30 AM 10/1/2006, you wrote: >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 <<mailto:ponyrubs%40>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...
Guest guest Posted October 1, 2006 Report Share Posted October 1, 2006 She could have some activated viruses, strep, mycoplasmas and several other bacteria that are hard to culture. MDL is a good lab to start with. At 09:03 AM 10/1/2006, you wrote: >Thanks, , > >The thing that gave me pause was that she does seem to do better on >steroids, and that didn't seem to fit. She is not an outdoors person - >never has been, and has never seen a tick. But she did have a cat a long >while back. > >She also had a VERY BAD cat scratch - was attacked by a cat and ended up >with severe lacerations requiring sutures and antibiotic therapy while 6 >months pregnant. This was about 13 years ago. > >So, there are many things that may be going on. I hope her doc agrees to >the CD-57. I'll mention MDL. I have Burrascano's guidelines, and >occasionally hand them out to clients. I'm gonna get myself fired one >of these days (I do massage therapy at a wellness ceter connected to a >hospital). But if it saves one Lymie, it's worth it. I see a LOT of >chronic pain people, and if I can't resolve their issues in one or two >sessions, I start asking the Lyme questions. > >Thank you for the info. > > > > Sudylo RN / CHT <<mailto:boejr1%40>boejr1@...> wrote: >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>http://www.geocities.com/boe\ jr1/classic_teal.html > > >--------------------------------- >Get your own web address for just $1.99/1st yr. We'll help. Small >Business. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2006 Report Share Posted October 1, 2006 Your adrenals could be under functioning. Try a saliva test from Genova. At 11:01 AM 10/1/2006, you wrote: >Although my rheum checks me twice a year for lupus, I'm always >negative. (I have red lesions that show up on my skin I've caught her >staring at them; she's never mentioned lupus to me-- I just look up >what tests she orderes) >I was extremely positive on Lyme tests (by CDC also)and I have been on >steroids three times since diagnosis, once for a seriously pinched >nerve and twice for severe allergies and hives. I have always felt >better on them! Not that my pain and brain fog are better, but I do >have so much more energy and the nausea is non-existent at those >times. Also, my docs don't know enough about Lyme to know about the >contraindication. > > > > > > > Thanks, , > > > > The thing that gave me pause was that she does seem to do better on >steroids, and that didn't seem to fit. She is not an outdoors person - >never has been, and has never seen a tick. But she did have a cat a >long while back. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2006 Report Share Posted October 1, 2006 I agree. I tried it with my first LLMD and didn't like it at all. At 04:03 PM 10/1/2006, you wrote: >You know, I just can't recommend a protocol that is so secretive. I want >to know what will be expected down the line before I risk starting down a >path I might rather not be on. > >I wish all the best to anyone who chooses this path. If I could " look >before I buy, " I might go there too. > > > >eric schulman <<mailto:eric_s11050%40>eric_s11050@...> >wrote: 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 >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...
Guest guest Posted October 2, 2006 Report Share Posted October 2, 2006 His PTTLA test was extremely elevated, as many of the test results were abnormal yet the doctor even wrote on the results " all normal " . His PTTLA has stayed elevated since then also. I agree with you, many of the symptoms are the same as Lyme and both are " clinical diagnosis " . I am just glad we found this Family physician that we have now, he actually shows us all the test results and explains them to us. He does not know much about Lyme, but is willing to listen, and if we ask for anything he does what he can. He even found us a lady to teach us sign language locally and free of charge. It has been extemely hard since hubby lost his hearing and voice, and none of the doctors/specialists can tell us if it is from the Lyme or the medicine he was on. Of course it helps that he knew my husband before he got sick. Hubby was police officer/security at the hospital this doctor worked at in the early 90's. anita > > Wondering what you mean that the lupus test was > positive? It's my understanding that there is no > definitive test for lupus. (Initially, the docs > thought my daughter might have lupus, so we've been > down this road.) I think certain test results are > suggestive of lupus--beyond that, it's really a > clinical diagnosis. There's a list of I believe 9 > symptoms. The docs say if you have five of the nine, > you're considered to have lupus. My daughter had four. > (But these are the same " experts " who wouldn't even > consider the possibility of lyme, though as I recall, > most of the nine symptoms would fit lyme too.) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2006 Report Share Posted October 3, 2006 >Wondering what you mean that the lupus test was > positive? It's my understanding that there is no > definitive test for lupus. What I found out when researching was that there are markers for Lupus, just as for R.A., etc. Negative to the marker doesn't mean you don't have it. I'm just glad my doc continues to monitor the whole picture instead of ignoring everything else to the exclusion of lyme. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 26, 2006 Report Share Posted December 26, 2006 Hi Everyone: I don't have much time to write for I'm sure you are all in the same situation we are with the holidays and school out etc etc. I did want to ask even though this is not a " lupus " group - if there is anyone familar with lupus and could pass along some information to me or web sites etc. As some of you that know me, know that I have been ill for almost two years now and I have had just about every test done in the book. The last test or should I say the next test I am having done is the endoscopy just to see if my stomach and throat are doing ok with all the pain meds and others meds I am taking for other illnesses I have. My rheumy dr who is also ne's thinks that there is some type of autoimmune disease just sitting dormant in my body and waiting to come alive on the blood work. I have my blood tested every six months to watch for any thing funny and also to watch over my liver to make sure the meds are destroying it. So I guess what I am asking after I wrote a book HA those that know me know I love to talk so I also love to type - What are symptoms of Lupus? is there any one thing that anyone has experienced that made you know it was lupus. I have looked up what I could on the internet and I fall into most of the catergories but my blood work comes back normal. At this point I feel great one day so I make the most of it for the next day I am down and in bed. My energy level is zero unless I am on a low dose of pain meds - I made them take me off the narcotics for I was loosing my life. I hurt everyday just as most of our kids do and just try to stay positive. From a religious belief, I prayed so hard for God to take ne's pain away for I could not take it anymore exactly two years ago and I have to laugh for ne is doing awesome and only hurts when she physically hurts herself like bumping into something etc. So we in my family find it very coincendental that her pain stopped and mine came from no where. I had a hysterectomy three years ago which I was hoping would be great and instead it opened a whole new can of illnesses some that even some of the doctors haven't even heard of - for instance pseudo tumor. I know Robinn is familar with that - are any of you? I " m just trying to see if I can tie all of this in together. So I know it's the holidays and everyone is running around or relaxing hopefully but once we are back to our regular schedules and you have any info you could share with me I would so greatly appreciate it and so would my family. My poor husband feels so helpless and I can see the pain in his face when I am in so much pain. He even wanted me to go back on the narcotics for he couldn't stand watching me be in so much pain. It is just a mystery and I'm ready to go on that tv show about medical mysteries. Maybe you will see me there someday LOL Everyone have a wonderful Happy New Year and here's to the Arthritis Foundation for finding a cure or at least come close to something so that all of our BEAUTIFUL children do not have to suffer anymore. God Bless - Kim Summerhill and ne (12 yrs - almost 13) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 26, 2006 Report Share Posted December 26, 2006 Kim I am so sorry to hear about your struggles. I do have a friend that has lupus, but I don't specifically know the symptoms. I know that she always ached.....and I know that sometimes she couldn't get out of bed. But I really know nothing about the blood work. I know we were talking about drugs, and I know she was on methotrexate and thought it was working great for her. Unfortunately I don't see her that often, and don't know much about it. I am so glad to hear your daughter is feeling better. I know how that feels because Allie is feeling so much better. She has been symptom free for about 6 months. I don't like to say that too much because it can sneak up and bite us really quickly! Otherwise all is well at our home, just the normal everyday stuff! If I find out more, I will be sure to pass it along. I will pray for you as well! I saw the Hershey Lodge on TV the other day. It looks spectacular! I hope you can make it there! and Allie (10 poly) ________________________________ From: [mailto: ] On Behalf Of Kim Summerhill Sent: Tuesday, December 26, 2006 7:10 AM Subject: RE: Lupus Hi Everyone: I don't have much time to write for I'm sure you are all in the same situation we are with the holidays and school out etc etc. I did want to ask even though this is not a " lupus " group - if there is anyone familar with lupus and could pass along some information to me or web sites etc. As some of you that know me, know that I have been ill for almost two years now and I have had just about every test done in the book. The last test or should I say the next test I am having done is the endoscopy just to see if my stomach and throat are doing ok with all the pain meds and others meds I am taking for other illnesses I have. My rheumy dr who is also ne's thinks that there is some type of autoimmune disease just sitting dormant in my body and waiting to come alive on the blood work. I have my blood tested every six months to watch for any thing funny and also to watch over my liver to make sure the meds are destroying it. So I guess what I am asking after I wrote a book HA those that know me know I love to talk so I also love to type - What are symptoms of Lupus? is there any one thing that anyone has experienced that made you know it was lupus. I have looked up what I could on the internet and I fall into most of the catergories but my blood work comes back normal. At this point I feel great one day so I make the most of it for the next day I am down and in bed. My energy level is zero unless I am on a low dose of pain meds - I made them take me off the narcotics for I was loosing my life. I hurt everyday just as most of our kids do and just try to stay positive. From a religious belief, I prayed so hard for God to take ne's pain away for I could not take it anymore exactly two years ago and I have to laugh for ne is doing awesome and only hurts when she physically hurts herself like bumping into something etc. So we in my family find it very coincendental that her pain stopped and mine came from no where. I had a hysterectomy three years ago which I was hoping would be great and instead it opened a whole new can of illnesses some that even some of the doctors haven't even heard of - for instance pseudo tumor. I know Robinn is familar with that - are any of you? I " m just trying to see if I can tie all of this in together. So I know it's the holidays and everyone is running around or relaxing hopefully but once we are back to our regular schedules and you have any info you could share with me I would so greatly appreciate it and so would my family. My poor husband feels so helpless and I can see the pain in his face when I am in so much pain. He even wanted me to go back on the narcotics for he couldn't stand watching me be in so much pain. It is just a mystery and I'm ready to go on that tv show about medical mysteries. Maybe you will see me there someday LOL Everyone have a wonderful Happy New Year and here's to the Arthritis Foundation for finding a cure or at least come close to something so that all of our BEAUTIFUL children do not have to suffer anymore. God Bless - Kim Summerhill and ne (12 yrs - almost 13) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 26, 2006 Report Share Posted December 26, 2006 My daughter has Lupus along with JRA. she doesn't have the classic rash or anything though. Here are a few websites for you to check out. I can't tell you the symptoms specifically since she has JRA too and they run together. Her response to medications and blood work has given her the diagnosis along with some questionairres etc. Wish I could be more helpful. I understand chronic pain since I too try to avoid the narcotics cause they throw me in a loopy world. Have you tried Ultram? My daughter finds it very effective. It is the same chemical make up as a narcotic without the addictive properties. Have you tried massage, chiropractor or accupuncture? Best of luck to you. e, mom to joe 19 poly and lupus (AKA rheupus) who will be 20 on Friday!!! Oh my!! http://www.niams.nih.gov/hi/topics/lupus/tengo/english.htm http://www.lupus.org/newsite/index.html http://www.mayoclinic.com/health/lupus/DS00115 __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2006 Report Share Posted December 29, 2006 --Kim,. I am so sorry to read that you are still struggling. I dont know much about lupus except that a friend of mind had the disciod kind and would get aweful rashes on her face. Please keepus informed of your tests, we will continue to hold you up in prayer and close in our hearts. hugs Helen and (9,systemic) - In , " Kim Summerhill " <kimsumm@...> wrote: > > Hi Everyone: I don't have much time to write for I'm sure you are all in the same situation we are with the holidays and school out etc etc. > > I did want to ask even though this is not a " lupus " group - if there is anyone familar with lupus and could pass along some information to me or web sites etc. As some of you that know me, know that I have been ill for almost two years now and I have had just about every test done in the book. The last test or should I say the next test I am having done is the endoscopy just to see if my stomach and throat are doing ok with all the pain meds and others meds I am taking for other illnesses I have. > > My rheumy dr who is also ne's thinks that there is some type of autoimmune disease just sitting dormant in my body and waiting to come alive on the blood work. I have my blood tested every six months to watch for any thing funny and also to watch over my liver to make sure the meds are destroying it. > > So I guess what I am asking after I wrote a book HA those that know me know I love to talk so I also love to type - > > What are symptoms of Lupus? is there any one thing that anyone has experienced that made you know it was lupus. I have looked up what I could on the internet and I fall into most of the catergories but my blood work comes back normal. At this point I feel great one day so I make the most of it for the next day I am down and in bed. My energy level is zero unless I am on a low dose of pain meds - I made them take me off the narcotics for I was loosing my life. I hurt everyday just as most of our kids do and just try to stay positive. > > From a religious belief, I prayed so hard for God to take ne's pain away for I could not take it anymore exactly two years ago and I have to laugh for ne is doing awesome and only hurts when she physically hurts herself like bumping into something etc. So we in my family find it very coincendental that her pain stopped and mine came from no where. I had a hysterectomy three years ago which I was hoping would be great and instead it opened a whole new can of illnesses some that even some of the doctors haven't even heard of - for instance pseudo tumor. I know Robinn is familar with that - are any of you? I " m just trying to see if I can tie all of this in together. > > So I know it's the holidays and everyone is running around or relaxing hopefully but once we are back to our regular schedules and you have any info you could share with me I would so greatly appreciate it and so would my family. My poor husband feels so helpless and I can see the pain in his face when I am in so much pain. He even wanted me to go back on the narcotics for he couldn't stand watching me be in so much pain. It is just a mystery and I'm ready to go on that tv show about medical mysteries. Maybe you will see me there someday LOL > > Everyone have a wonderful Happy New Year and here's to the Arthritis Foundation for finding a cure or at least come close to something so that all of our BEAUTIFUL children do not have to suffer anymore. > > God Bless - Kim Summerhill and ne (12 yrs - almost 13) > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2007 Report Share Posted April 9, 2007 I was diagnosed with Lupus after the delivery of my son, the one with CVID. The onset was the actual delivery-fine before, almost died during. I have been convinced that my lupus onset during his labor is somehow related to what he is going through, and every doctor tells me I'm wrong. They all say it's a coincidence. But I have had lupus now for 5 years. I've wanted him tested too but they haven't. Now he has his own immune disorder. Feel free to email me with further questions. Janet > > anyone here familiar with lupus? > I have some symptoms that have never been explained, but a few things > stand out. One thing is restrictive pulmonary issues. My pulmo was at > first concerned about sarcoid, but that has been ruled out. He will > keep watching it, but had mentioned that lupus and/or RA can be the > cause of what has been going on with my lungs(in addition to asthma). > On Thursday, we were driving out of state to take MIL to care for her > parents. Midway thru Ohio, we stopped for lunch. I was not itchy, but > my daughter said I looked red. I went to look in the mirror, only to > see the strangest rash on my face. like.....across my nose, and down > under my eyes, across my face on each side. Bright red and splotchy. I > assumed it must be a food allergy, though I hadnt eaten anything know > to be an allergen--beef, potatoes, carrots, mixed fruit, and tossed > salad. Pretty much what I would eat any other day. No sauces or > anything, nothing I wouldnt know the ingredient of, I dont think. My > DH went to a store and bought benedryl just in case, since I do have > severe asthma but the bendryl didnt do a thing for the rash. A few > days prior to and including that day, I was having a hard week, with > this horrid achiness and fatigue I get off and on, that lasts a few > days, usually, and comes and goes on its own. Its like influenza, with > no illness--the pain and tiredness, I mean. I started having the > chills and headache, and the rash got worse and worse. When we got to > the hotel, I checked my temp and it was 100. I tend to not run temps, > even when very sick, and my usual temp is under 98. the next day, the > rash was gone and so was all the other things that had been going on, > I felt fine. > Ive heard of the lupus butterfly and wonder if this is something I > should call and ask about? honestly, as much as I love our drs, I feel > like such a nut calling and going in all the time, even though Im > usually on target with something being wrong. I would have gone right > in if the rash had stayed, but it seems silly to go to the office if > its gone away now. > > valarie > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2007 Report Share Posted July 27, 2007 group main page menu on the left side, Files, disease research results, lupus bG > > Where do I look for any findings or results on using this on Lupus? > > Thanks, > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2007 Report Share Posted July 30, 2007 I`m curious as to the type of Lupus you have. My friend has to avoid rife type machines in that she produces too many white blood cells. And a kill off well produce more of what she doesn`t need. I thought it strange at first, but it all started to come togather. The only sessions I gave her were for a tumor on a toe where I could islalate just 1 small area to do the treatements. >From: Ivan Olsen <YAPAR@...> >Reply- > " Baby Grand (Bob Luhrs) germkiller " >< >, m ><graffer212@...> >Subject: Re:Lupus >Date: Fri, 27 Jul 2007 11:14:47 -0700 > > >i love this group and everything it does. >and i am also aware that Hyperbolic Oxygen Chamber is effective on >Lupus. >please email me off list for more details and check the germkiller >archives for info. >peace >ivan > >On Jul 26, 2007, at 7:43 PM, m wrote: > > > Where do I look for any findings or results on using this on Lupus? > > > > Thanks, > _________________________________________________________________ http://liveearth.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2009 Report Share Posted March 24, 2009 Hi Chris I go like this everytime I go out in the sun. The lumps are normally blisters on me but all over. The kids take great please in trying to pop them, they think I am bubble wrap I have to prise them off me. Let me know how you get on. Thought it was just me who did this. Haven't been to docs with it though Rach > > I went out in the sun last week and come up all lumpy and itchy on my shins, arms and chest which happens every year but thought while it is still a bit itchy, red and lumpy I would let the duty doc have a look. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2009 Report Share Posted March 25, 2009 Isn't that normal? It wouldn't have occurred to me to go to the doctor's about it. Miriam > > I went out in the sun last week and come up all lumpy and itchy on my shins, arms and chest which happens every year but thought while it is still a bit itchy, red and lumpy I would let the duty doc have a look. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2009 Report Share Posted March 25, 2009 It has never occurred to me to go to the doctors about it either Miriam and yesterday I was just hoping for some cream to stop the itch. If you have it then you should go too, dont leave it like I have. Chris > > Isn't that normal? It wouldn't have occurred to me to go to the doctor's about it. > Miriam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2009 Report Share Posted March 25, 2009 ***> Anyone any experience of this? Hello I am really sorry to hear that you are suffering from lupus. I don't have any personal experience with it, except I know of a number of dogs who have it - the treatment would not be much different, I suppose, as the illness is the same. When mainly the skin is affected, the usual advice is (apart from thenecessary prednisolone) high dosages of Vit E and Omegas. Has your doctor ordered an ANA (anti-nuclear-antibody) test? I can't really give you any constructive advice, but I found the following website, which might be helpful as it explains the different way lupus may affect the body. http://www.arc.org.uk/arthinfo/patpubs/6023/6023.asp Warm wishes Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2009 Report Share Posted March 25, 2009 No, I think it is normal for me to react that way to the sun. If I went to the GP every time something like that happened I would be there every week! Calamine lotion is soothing for itchy skin, by the way. Miriam > It has never occurred to me to go to the doctors about it either Miriam and yesterday I was just hoping for some cream to stop the itch. If you have it then you should go too, dont leave it like I have. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2009 Report Share Posted March 25, 2009 Hi Thank you for the info, yes he has ordered the ANA, CRP, FBC, ESR, Glucose, Bone profile, Liver, iron studies and of course TFTs. He has prescribed prednisolone. Looks like I will have to start eating lots of fish! Chris > > ***> Anyone any experience of this? > > Warm wishes > > > [Edit Abbrev Mod] Quote Link to comment Share on other sites More sharing options...
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