Guest guest Posted December 10, 2008 Report Share Posted December 10, 2008 Welcome, Elma; first off, prednisone has the unpleasant and dangerous side effect of bowel perforation, at a time when leaky gut syndrome and inflammation is already perforating the bowel lining. I've seen asthma and it's close relative COPD reverse or reduce in just days with an increase of glutathione and other antioxidants. The research has supported the low glutathione=high lung damage link for years and the damage and restriction can be reduced. Duncan > > Hi, > I have recently joined this group because I wanted to get some answers > from people that have experienced clearing yeast from the gut. Is it > possible to do? I asked my doctor and she said she has cured thousands- > -well, I am not sure I believe that. > > I have asthma/chronic bronchitis. Probably the antibiotics and > prednisone have let the yeast take over. I have stayed on the diet for > foods that I am allergic to which is just about everything--wheat, > gluten, eggs, milk, yeast among a few others. The Nystatin really does > good for me but my body could not take it more than 4 weeks. Then she > gave me something like SF22 and it did the same thing. I am now > starting 1/2 dose of each and bulk for the stool. > > I am getting discouraged and wonder if I have to be on this diet for > life. That's why I would like to hear from someone that has actually > been successful. Thanks for your time. Elma > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2008 Report Share Posted December 21, 2008 Hello I am new How bad is transplant > > > > Hello, my name is Lori Cummins. I was diagnosed with Chronic Active > Autoimmune Hepatitis on July 29, 1996. Not before it was too late to > help me in any other way but a Liver transplant. I was transplanted > on 3~11~97 at the Mayo Clinic In Rochester, MN. > > I have been watching the group now for a couple of days trying to > get to know everyone a little before I jump in. Any questions you > have you can direct them to the group or feel free to E~mail me > directly at tlknj@ I read Barbara's post on the thrush. Nystatin > is what I have bben given for the thrush, I have had it 2 times since > transplant. It works very well. Hello everyone!!! > > Remember " No one should go throught his alone " TTFN > > > hello lori my name is becky i am 51 years old, i have been diagnosed > with primary billiary cirrhosis about 2 years ago ,i go to a very > good dr, in jackson tn .i have a husband and 3 children 2 which are > married 2 s, 1 boy, my son and oldest daughter are married and > have children i have 5 grandchildren and 2 which i claim but are not > my own so i guess that makes me having 7 gradchildren my youngest > daughter is 15 and still lives at home ,i am a member of a great > pentecostal church nearby my strength comes from my jesus my best > friend thank you becky > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 23, 2008 Report Share Posted December 23, 2008 Hi Cortnie  I think you will find lots of support here. We all know that its a long hard slog to get rid of candida, and unfortunately diet probably isnt enough to get rid of it. The alternative practitioner who advises on this site advocates the use of selenium, inulin and whey aswell as diet, but I'll leave it to duncan to expalin that.  Helen From: silver.renaissance <silver.renaissance@...> Subject: New to Group candidiasis Received: Tuesday, 23 December, 2008, 8:04 PM Hi, I'm Cortnie. and I've been having candida problems off and on for nearly a year (our anniversary will be this January). I don't really have the money to see a doctor, so its been a struggle. I'd visited a free clinic every couple months until September when I finally found a naturalistic clinic that I could afford, and that was my first experience with the anti-candida diet. I had eliminated sugar and alcohol until then, but no one had told me about the carbohydrate aspect, and after a month of the diet there is no improvement. Different sources online have confused me about what is and is not acceptable to eat. What are some opinions on the following?: nuts, coconut milk, grapefruit/cranberr ies, brown rice, oats, dairy. Some sites indicate that these contain too much sugar, others recommend them. I have also heard that some people can have candida related reactions to condoms (due to a latex allergy), or an allergen in lubricant. As far as I know I'm not allergic, but does anyone know anything about this? So confused. Thank you Stay connected to the people that matter most with a smarter inbox. Take a look http://au.docs./mail/smarterinbox Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 24, 2008 Report Share Posted December 24, 2008 Hi Courtnie; when you read the details you'll see that the people who advocate carbohydrate foods are wrong; all of them will feed candida and foster a bad bowel ecology (dysbiosis). So, you'll have to reduce or eliminate the whole grains, coconut milk, most fruit, some veggies, that contain sugar or starch. As luck would have it pure alcohol is OK; it does not feed candida, so you can have it straight up or mix it with sugar-free mix and enjoy a few with your friends and family ...just watch for the hidden sugars. The inulin with few exceptions will restore good bowel culture in a few weeks, depending on severity of the dysbiosis/candida. The selenium and cold-extracted whey reduces pathogen adhesion as well as heals leaky gut, escorts heavy metals from the body and breaks down toxins you might react to during your treatment, plus it fortifies every cell, including the white blood cells of your immune system. Duncan Crow http://members.shaw.ca/duncancrow > > > From: silver.renaissance <silver.renaissance@...> > Subject: New to Group > candidiasis > Received: Tuesday, 23 December, 2008, 8:04 PM > > > > > > > Hi, I'm Cortnie. and I've been having candida problems off and on for > nearly a year (our anniversary will be this January). > I don't really have the money to see a doctor, so its been a struggle. > I'd visited a free clinic every couple months until September when I > finally found a naturalistic clinic that I could afford, and that was > my first experience with the anti-candida diet. I had eliminated sugar > and alcohol until then, but no one had told me about the carbohydrate > aspect, and after a month of the diet there is no improvement. > > Different sources online have confused me about what is and is not > acceptable to eat. What are some opinions on the following?: nuts, > coconut milk, grapefruit/cranberr ies, brown rice, oats, dairy. Some > sites indicate that these contain too much sugar, others recommend them. > > I have also heard that some people can have candida related reactions > to condoms (due to a latex allergy), or an allergen in lubricant. As > far as I know I'm not allergic, but does anyone know anything about this? > > So confused. Thank you > > > > > > > > > > > > > > > > > Stay connected to the people that matter most with a smarter inbox. Take a look http://au.docs./mail/smarterinbox > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 25, 2008 Report Share Posted December 25, 2008 Oh my god! If I am understanding you correctly, we are allowed to drink vodka with water and lime??? If this is true, my Christmas just got a whole lot better!....lol From: Duncan Crow <duncancrow@...> Subject: Re: New to Group candidiasis Received: Wednesday, December 24, 2008, 1:53 PM Hi Courtnie; when you read the details you'll see that the people who advocate carbohydrate foods are wrong; all of them will feed candida and foster a bad bowel ecology (dysbiosis). So, you'll have to reduce or eliminate the whole grains, coconut milk, most fruit, some veggies, that contain sugar or starch. As luck would have it pure alcohol is OK; it does not feed candida, so you can have it straight up or mix it with sugar-free mix and enjoy a few with your friends and family ...just watch for the hidden sugars. The inulin with few exceptions will restore good bowel culture in a few weeks, depending on severity of the dysbiosis/candida. The selenium and cold-extracted whey reduces pathogen adhesion as well as heals leaky gut, escorts heavy metals from the body and breaks down toxins you might react to during your treatment, plus it fortifies every cell, including the white blood cells of your immune system. Duncan Crow http://members. shaw.ca/duncancr ow > > > From: silver.renaissance <silver.renaissance @...> > Subject: New to Group > candidiasis > Received: Tuesday, 23 December, 2008, 8:04 PM > > > > > > > Hi, I'm Cortnie. and I've been having candida problems off and on for > nearly a year (our anniversary will be this January). > I don't really have the money to see a doctor, so its been a struggle. > I'd visited a free clinic every couple months until September when I > finally found a naturalistic clinic that I could afford, and that was > my first experience with the anti-candida diet. I had eliminated sugar > and alcohol until then, but no one had told me about the carbohydrate > aspect, and after a month of the diet there is no improvement. > > Different sources online have confused me about what is and is not > acceptable to eat. What are some opinions on the following?: nuts, > coconut milk, grapefruit/cranberr ies, brown rice, oats, dairy. Some > sites indicate that these contain too much sugar, others recommend them. > > I have also heard that some people can have candida related reactions > to condoms (due to a latex allergy), or an allergen in lubricant. As > far as I know I'm not allergic, but does anyone know anything about this? > > So confused. Thank you > > > > > > > > > > > > > > > > > Stay connected to the people that matter most with a smarter inbox. Take a look http://au.docs. / mail/smarterinbo x > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 25, 2008 Report Share Posted December 25, 2008 Hi Duncan, Would you consider pure alcohol, rum and vodka? And is mineral water ok? From: Duncan Crow <duncancrow@...> Subject: Re: New to Group candidiasis Received: Wednesday, December 24, 2008, 1:53 PM Hi Courtnie; when you read the details you'll see that the people who advocate carbohydrate foods are wrong; all of them will feed candida and foster a bad bowel ecology (dysbiosis). So, you'll have to reduce or eliminate the whole grains, coconut milk, most fruit, some veggies, that contain sugar or starch. As luck would have it pure alcohol is OK; it does not feed candida, so you can have it straight up or mix it with sugar-free mix and enjoy a few with your friends and family ...just watch for the hidden sugars. The inulin with few exceptions will restore good bowel culture in a few weeks, depending on severity of the dysbiosis/candida. The selenium and cold-extracted whey reduces pathogen adhesion as well as heals leaky gut, escorts heavy metals from the body and breaks down toxins you might react to during your treatment, plus it fortifies every cell, including the white blood cells of your immune system. Duncan Crow http://members. shaw.ca/duncancr ow > > > From: silver.renaissance <silver.renaissance @...> > Subject: New to Group > candidiasis > Received: Tuesday, 23 December, 2008, 8:04 PM > > > > > > > Hi, I'm Cortnie. and I've been having candida problems off and on for > nearly a year (our anniversary will be this January). > I don't really have the money to see a doctor, so its been a struggle. > I'd visited a free clinic every couple months until September when I > finally found a naturalistic clinic that I could afford, and that was > my first experience with the anti-candida diet. I had eliminated sugar > and alcohol until then, but no one had told me about the carbohydrate > aspect, and after a month of the diet there is no improvement. > > Different sources online have confused me about what is and is not > acceptable to eat. What are some opinions on the following?: nuts, > coconut milk, grapefruit/cranberr ies, brown rice, oats, dairy. Some > sites indicate that these contain too much sugar, others recommend them. > > I have also heard that some people can have candida related reactions > to condoms (due to a latex allergy), or an allergen in lubricant. As > far as I know I'm not allergic, but does anyone know anything about this? > > So confused. Thank you > > > > > > > > > > > > > > > > > Stay connected to the people that matter most with a smarter inbox. Take a look http://au.docs. / mail/smarterinbo x > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2008 Report Share Posted December 28, 2008 Yes, you can drink vodka because although it may be an irritant it will not feed germs or candida. But lime may contain enough sugar to upset the diet a bit even though it's not really seen as a very sweet food. Duncan > > > > > > From: silver.renaissance <silver.renaissance @...> > > Subject: New to Group > > candidiasis > > Received: Tuesday, 23 December, 2008, 8:04 PM > > > > > > > > > > > > > > Hi, I'm Cortnie. and I've been having candida problems off and on > for > > nearly a year (our anniversary will be this January). > > I don't really have the money to see a doctor, so its been a > struggle. > > I'd visited a free clinic every couple months until September when I > > finally found a naturalistic clinic that I could afford, and that > was > > my first experience with the anti-candida diet. I had eliminated > sugar > > and alcohol until then, but no one had told me about the > carbohydrate > > aspect, and after a month of the diet there is no improvement. > > > > Different sources online have confused me about what is and is not > > acceptable to eat. What are some opinions on the following?: nuts, > > coconut milk, grapefruit/cranberr ies, brown rice, oats, dairy. Some > > sites indicate that these contain too much sugar, others recommend > them. > > > > I have also heard that some people can have candida related > reactions > > to condoms (due to a latex allergy), or an allergen in lubricant. As > > far as I know I'm not allergic, but does anyone know anything about > this? > > > > So confused. Thank you > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Stay connected to the people that matter most with a smarter > inbox. Take a look http://au.docs. / mail/smarterinbo x > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2008 Report Share Posted December 28, 2008 Yes, I would still call spirits pure if they are 40% alcohol and the rest water. For our purposes there's nothing in either one to feed microbes or candida. Duncan > > > > > > From: silver.renaissance <silver.renaissance @...> > > Subject: New to Group > > candidiasis > > Received: Tuesday, 23 December, 2008, 8:04 PM > > > > > > > > > > > > > > Hi, I'm Cortnie. and I've been having candida problems off and on > for > > nearly a year (our anniversary will be this January). > > I don't really have the money to see a doctor, so its been a > struggle. > > I'd visited a free clinic every couple months until September when I > > finally found a naturalistic clinic that I could afford, and that > was > > my first experience with the anti-candida diet. I had eliminated > sugar > > and alcohol until then, but no one had told me about the > carbohydrate > > aspect, and after a month of the diet there is no improvement. > > > > Different sources online have confused me about what is and is not > > acceptable to eat. What are some opinions on the following?: nuts, > > coconut milk, grapefruit/cranberr ies, brown rice, oats, dairy. Some > > sites indicate that these contain too much sugar, others recommend > them. > > > > I have also heard that some people can have candida related > reactions > > to condoms (due to a latex allergy), or an allergen in lubricant. As > > far as I know I'm not allergic, but does anyone know anything about > this? > > > > So confused. Thank you > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Stay connected to the people that matter most with a smarter > inbox. Take a look http://au.docs. / mail/smarterinbo x > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2009 Report Share Posted January 12, 2009 Hi, . Welcome to the group. It may take some time before you begin to notice any improvement in your daughter. She is taking the same combo of meds my son was on and they did work for him. He did max out on the Celebrex for awhile, before the mtx kicked in and we were able to begin to lower the Celebrex and eventually get him off. Then he was just on the MTX which worked well for him. It takes some kids 8 weeks or more on the mtx before a difference begins to be seen, plus as she grows she will need to have the dosage adjusted, especially in the beginning. If she is in extreme pain, you may want to look into joint injections. My son's JRA began as your daughter's is, pain in the ankle. At that time, joint injections were not often done, but now it seems more popular. The dr injects a steroid directly into the joint and some children get relief, at least for a while. This then gives the other meds a chance to get working. You may want to research that. The physical therapy is important, to help keep the joints loose, even if done for a short period of time. For my son, we would also work at home. One of the exercises the therapist had us do was every morning he would soak his foot/ankle in warm water and then I would help him to gently rotate the ankle. That did help. We had to get up a little earlier to make to school on time, but it was worth it. I would suggest also that you have her eyes checked for inflammation if you have not already. Pauci - articular girls are more likely to have uveitis. Also with the MTX she should be on folic acid (or take a multi vitamin that has it) to help minimize side effects. My son did not have too many, mostly mouth sores, and taking the folic acid helped. Please feel free to ask any questions you have. The parents here understand how you feel and know the frustration you have. Please let us know how she is doing, Michele ( 21, spondy) ________________________________ From: [mailto: ] On Behalf Of Crawford Sent: Sunday, January 11, 2009 6:19 PM Subject: new to group My name is and my 2 year old daughter was diagnosed with JRA in September. She only has her left ankle affected right now but it causes her extreme pain. She was on Naprosyn for 3 months with no relief. She has just switched to Methotrexate and Celebrex 2 weeks ago. No change so far. She had labs done last week and we should get the results tomorrow. She goes to physical therapy once a week which is just excrutiating for her and me. She has not had one symptom free day since August. I was wondering if anyone had any luck with alternative treatments. We are also looking into hydrotherapy. Any suggestions/advice would be greatly appreciated. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2009 Report Share Posted January 12, 2009 > > Hi, . Welcome to the group. It may take some time before you begin > to notice any improvement in your daughter. She is taking the same combo > of meds my son was on and they did work for him. He did max out on the > Celebrex for awhile, before the mtx kicked in and we were able to begin > to lower the Celebrex and eventually get him off. Then he was just on > the MTX which worked well for him. It takes some kids 8 weeks or more on > the mtx before a difference begins to be seen, plus as she grows she > will need to have the dosage adjusted, especially in the beginning. If > she is in extreme pain, you may want to look into joint injections. My > son's JRA began as your daughter's is, pain in the ankle. At that time, > joint injections were not often done, but now it seems more popular. The > dr injects a steroid directly into the joint and some children get > relief, at least for a while. This then gives the other meds a chance to > get working. You may want to research that. > > The physical therapy is important, to help keep the joints loose, even > if done for a short period of time. For my son, we would also work at > home. One of the exercises the therapist had us do was every morning he > would soak his foot/ankle in warm water and then I would help him to > gently rotate the ankle. That did help. We had to get up a little > earlier to make to school on time, but it was worth it. > > I would suggest also that you have her eyes checked for inflammation if > you have not already. Pauci - articular girls are more likely to have > uveitis. Also with the MTX she should be on folic acid (or take a multi > vitamin that has it) to help minimize side effects. My son did not have > too many, mostly mouth sores, and taking the folic acid helped. > > Please feel free to ask any questions you have. The parents here > understand how you feel and know the frustration you have. Please let us > know how she is doing, Michele ( 21, spondy) > > > > > > > > > > > > ________________________________ > > From: [mailto: ] On > Behalf Of Crawford > Sent: Sunday, January 11, 2009 6:19 PM > > Subject: new to group > > > > My name is and my 2 year old daughter was diagnosed with JRA in > September. She only has her left ankle affected right now but it > causes her extreme pain. She was on Naprosyn for 3 months with no > relief. She has just switched to Methotrexate and Celebrex 2 weeks > ago. No change so far. She had labs done last week and we should get > the results tomorrow. She goes to physical therapy once a week which > is just excrutiating for her and me. She has not had one symptom free > day since August. I was wondering if anyone had any luck with > alternative treatments. We are also looking into hydrotherapy. Any > suggestions/advice would be greatly appreciated. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2009 Report Share Posted January 12, 2009 > > Hi, . Welcome to the group. It may take some time before you begin > to notice any improvement in your daughter. She is taking the same combo > of meds my son was on and they did work for him. He did max out on the > Celebrex for awhile, before the mtx kicked in and we were able to begin > to lower the Celebrex and eventually get him off. Then he was just on > the MTX which worked well for him. It takes some kids 8 weeks or more on > the mtx before a difference begins to be seen, plus as she grows she > will need to have the dosage adjusted, especially in the beginning. If > she is in extreme pain, you may want to look into joint injections. My > son's JRA began as your daughter's is, pain in the ankle. At that time, > joint injections were not often done, but now it seems more popular. The > dr injects a steroid directly into the joint and some children get > relief, at least for a while. This then gives the other meds a chance to > get working. You may want to research that. > > The physical therapy is important, to help keep the joints loose, even > if done for a short period of time. For my son, we would also work at > home. One of the exercises the therapist had us do was every morning he > would soak his foot/ankle in warm water and then I would help him to > gently rotate the ankle. That did help. We had to get up a little > earlier to make to school on time, but it was worth it. > > I would suggest also that you have her eyes checked for inflammation if > you have not already. Pauci - articular girls are more likely to have > uveitis. Also with the MTX she should be on folic acid (or take a multi > vitamin that has it) to help minimize side effects. My son did not have > too many, mostly mouth sores, and taking the folic acid helped. > > Please feel free to ask any questions you have. The parents here > understand how you feel and know the frustration you have. Please let us > know how she is doing, Michele ( 21, spondy) > > > > > > > > > > > > ________________________________ > > From: [mailto: ] On > Behalf Of Crawford > Sent: Sunday, January 11, 2009 6:19 PM > > Subject: new to group > > > > My name is and my 2 year old daughter was diagnosed with JRA in > September. She only has her left ankle affected right now but it > causes her extreme pain. She was on Naprosyn for 3 months with no > relief. She has just switched to Methotrexate and Celebrex 2 weeks > ago. No change so far. She had labs done last week and we should get > the results tomorrow. She goes to physical therapy once a week which > is just excrutiating for her and me. She has not had one symptom free > day since August. I was wondering if anyone had any luck with > alternative treatments. We are also looking into hydrotherapy. Any > suggestions/advice would be greatly appreciated. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2009 Report Share Posted January 12, 2009 Thanks Michele. We go back to see her doctor March 6 so we are giving the medicine until then to start working. She has only had two doses of MTX so far. I am hopeful that since she was diagnosed so young that she will not have problems as an adult. The one thing I have learned over the last few months is that disease is unpredictable and seems to be so different in all kids. We have not discussed the steroid injections yet with her doctor but we will next time. She also said she could get her MTX through an injection if the pills did not work. Did you give the injections yourself. Our concern is that her doctor is an hour and a half away at The University of Florida so we can't go down there once a week for injections. She is high risk for eye inflammation because she is ANA positive so we go every three months to the opthamologist and so far so good. Even if she goes into remission we have to go see him every three months for four years.. I am worried about her little tummy with all this medicine. She is taking Prevacid and Zantac but she still says her tummy hurts sometimes. I have a feeling we are in for a long and bumpy ride. From: Tepper, Michele <MTepper@...> Subject: RE: new to group Date: Monday, January 12, 2009, 11:24 AM Hi, . Welcome to the group. It may take some time before you begin to notice any improvement in your daughter. She is taking the same combo of meds my son was on and they did work for him. He did max out on the Celebrex for awhile, before the mtx kicked in and we were able to begin to lower the Celebrex and eventually get him off. Then he was just on the MTX which worked well for him. It takes some kids 8 weeks or more on the mtx before a difference begins to be seen, plus as she grows she will need to have the dosage adjusted, especially in the beginning. If she is in extreme pain, you may want to look into joint injections. My son's JRA began as your daughter's is, pain in the ankle. At that time, joint injections were not often done, but now it seems more popular. The dr injects a steroid directly into the joint and some children get relief, at least for a while. This then gives the other meds a chance to get working. You may want to research that. The physical therapy is important, to help keep the joints loose, even if done for a short period of time. For my son, we would also work at home. One of the exercises the therapist had us do was every morning he would soak his foot/ankle in warm water and then I would help him to gently rotate the ankle. That did help. We had to get up a little earlier to make to school on time, but it was worth it. I would suggest also that you have her eyes checked for inflammation if you have not already. Pauci - articular girls are more likely to have uveitis. Also with the MTX she should be on folic acid (or take a multi vitamin that has it) to help minimize side effects. My son did not have too many, mostly mouth sores, and taking the folic acid helped. Please feel free to ask any questions you have. The parents here understand how you feel and know the frustration you have. Please let us know how she is doing, Michele ( 21, spondy) ____________ _________ _________ __ From: @group s.com [mailto: @group s.com] On Behalf Of Crawford Sent: Sunday, January 11, 2009 6:19 PM @group s.com Subject: new to group My name is and my 2 year old daughter was diagnosed with JRA in September. She only has her left ankle affected right now but it causes her extreme pain. She was on Naprosyn for 3 months with no relief. She has just switched to Methotrexate and Celebrex 2 weeks ago. No change so far. She had labs done last week and we should get the results tomorrow. She goes to physical therapy once a week which is just excrutiating for her and me. She has not had one symptom free day since August. I was wondering if anyone had any luck with alternative treatments. We are also looking into hydrotherapy. Any suggestions/ advice would be greatly appreciated. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2009 Report Share Posted January 13, 2009 Hi , My daughter had just turned three when she stopped walking. 6 months later she was diagnosed and put on Naproxen. It helped, but not enough. Methotrexate was added. Also helped, but not enough. She had not had more than a week of being pain free for over a year - until November when she began Methotrexate by injections. (she's almost 5 now) To answer your alternatives question, she's been doing aquatic therapy. We met with a physical therapist who specializes in working in the water. He worked out a group of excercises for to do in the heated pool 2x a week. I go with her and help with the excercises, then we play and swim and sit or swim in front of the jets (like a hot tub only in the giant heated pool). She absolutely loves it and told me several months ago that that is the only time she doesn't hurt. I would HIGHLY recommend aquatic therapy to anyone who has access. (warm baths all the time if no heated therapy pools) also started theraputic horesback riding last summer. Another thing she LOVES. She rides a huge horse and has used two different types of saddles. One is made of a thick fleece and feels like a heating pad. The other is more of a standard saddle but a little more pliable so she can put her legs into any position that is comfortable for her. looks completely at peace on Buddy and is anxious to go everytime. Her rhuemy says that not only is she building strength in her weakened core muscles, building her endurance, and gaining confidence in her physical abilities, but it has been proven that animals help strengthen immune systems! Good all round! I also give Reiki when she is hurting. This really seems to help take the edge off of her pain. She also has two very advanced energy healers who work on her from time to time. The before and after difference is phenomenal. Even if you don't believe in or understand energy medicine it is worth checking out. It is amazing how kids soak it up! I have one more suggestion that I haven't tried yet. Have you heard of Super Greens? A friend of a friend swears her life-long out of control JRA went into remission and never came back after starting Super Greens. Might be worth Googling! Let me know if you do! Good luck, Kirsten Wilder mom to , 4, spondyloarthropathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2009 Report Share Posted January 13, 2009 Her physical therapist said today that she is making progress. She was able to move her ankle more today than she has since she started therapy so we are hopeful that the MTX is working. I gave her Tylenol before therapy today and I think that also helped. She has not had a pain free day since September so we are due for one. Her doctor did say that if the MTX pills do not work we will try injections. I know she is just trying least involved treatment first and is moving towards the more invasive as we determine the other things are not working. We got lab results today and all levels are normal except for her sed rate of course. I did google super greens and it looks interesting. The powder looks to have a ton of vitamins in it, but it also talks about giving energy so I was wondering if there was caffeine in it. I didn't have time to read much so I will look again later. I have heard that black cherry juice is very good for JRA and also pomegranite juice. Thanks for the other suggestions. What is Reiki? I have never heard of that. I will look into an energy healer also. From: kirsten wilder <wilderhealing@...> Subject: Re:new to group Date: Monday, January 12, 2009, 7:50 PM Hi , My daughter had just turned three when she stopped walking. 6 months later she was diagnosed and put on Naproxen. It helped, but not enough. Methotrexate was added. Also helped, but not enough. She had not had more than a week of being pain free for over a year - until November when she began Methotrexate by injections. ( she's almost 5 now) To answer your alternatives question, she's been doing aquatic therapy. We met with a physical therapist who specializes in working in the water. He worked out a group of excercises for to do in the heated pool 2x a week. I go with her and help with the excercises, then we play and swim and sit or swim in front of the jets (like a hot tub only in the giant heated pool). She absolutely loves it and told me several months ago that that is the only time she doesn't hurt. I would HIGHLY recommend aquatic therapy to anyone who has access. (warm baths all the time if no heated therapy pools) also started theraputic horesback riding last summer. Another thing she LOVES. She rides a huge horse and has used two different types of saddles. One is made of a thick fleece and feels like a heating pad. The other is more of a standard saddle but a little more pliable so she can put her legs into any position that is comfortable for her. looks completely at peace on Buddy and is anxious to go everytime. Her rhuemy says that not only is she building strength in her weakened core muscles, building her endurance, and gaining confidence in her physical abilities, but it has been proven that animals help strengthen immune systems! Good all round! I also give Reiki when she is hurting. This really seems to help take the edge off of her pain. She also has two very advanced energy healers who work on her from time to time. The before and after difference is phenomenal. Even if you don't believe in or understand energy medicine it is worth checking out. It is amazing how kids soak it up! I have one more suggestion that I haven't tried yet. Have you heard of Super Greens? A friend of a friend swears her life-long out of control JRA went into remission and never came back after starting Super Greens. Might be worth Googling! Let me know if you do! Good luck, Kirsten Wilder mom to , 4, spondyloarthropathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2009 Report Share Posted January 13, 2009 Hi - We started on the MTX pills and quickly switched to the injection when the pills weren't working. Our rheumy taught us how to give the injection. I wasn't sure that I would be able to do it but once the nurse showed us how and let us practice we both figured it out. Grant was old enough at 10 to learn as well. The injection just seems to work better because more of the medicine is abosrbed into the body. You mentioned you are worried about her tummy. I know mentioned the folic acid. Grant was up to 3 mg/day of the folic acid and that worked for his stomach pains. That is significantly more than the amount in a multi vitimin so just in case that is all the folic you are taking you may want to talk to your rheumy about getting a higher dose. Apparently your body just gets rid of any extra folic that you take so I think a child can take up to 5mg/ day. Probably should check with the rheumy on that though. Unfortunatly JRA is a long bumpy ride. Thats what we are all here for though to help each other get through it. & Grant (11, Psa/Uveitis) > > From: Tepper, Michele <MTepper@...> > Subject: RE: new to group > > Date: Monday, January 12, 2009, 11:24 AM > > > > > > > Hi, . Welcome to the group. It may take some time before you begin > to notice any improvement in your daughter. She is taking the same combo > of meds my son was on and they did work for him. He did max out on the > Celebrex for awhile, before the mtx kicked in and we were able to begin > to lower the Celebrex and eventually get him off. Then he was just on > the MTX which worked well for him. It takes some kids 8 weeks or more on > the mtx before a difference begins to be seen, plus as she grows she > will need to have the dosage adjusted, especially in the beginning. If > she is in extreme pain, you may want to look into joint injections. My > son's JRA began as your daughter's is, pain in the ankle. At that time, > joint injections were not often done, but now it seems more popular. The > dr injects a steroid directly into the joint and some children get > relief, at least for a while. This then gives the other meds a chance to > get working. You may want to research that. > > The physical therapy is important, to help keep the joints loose, even > if done for a short period of time. For my son, we would also work at > home. One of the exercises the therapist had us do was every morning he > would soak his foot/ankle in warm water and then I would help him to > gently rotate the ankle. That did help. We had to get up a little > earlier to make to school on time, but it was worth it. > > I would suggest also that you have her eyes checked for inflammation if > you have not already. Pauci - articular girls are more likely to have > uveitis. Also with the MTX she should be on folic acid (or take a multi > vitamin that has it) to help minimize side effects. My son did not have > too many, mostly mouth sores, and taking the folic acid helped. > > Please feel free to ask any questions you have. The parents here > understand how you feel and know the frustration you have. Please let us > know how she is doing, Michele ( 21, spondy) > > ____________ _________ _________ __ > > From: @group s.com [mailto: @group s.com] On > Behalf Of Crawford > Sent: Sunday, January 11, 2009 6:19 PM > @group s.com > Subject: new to group > > My name is and my 2 year old daughter was diagnosed with JRA in > September. She only has her left ankle affected right now but it > causes her extreme pain. She was on Naprosyn for 3 months with no > relief. She has just switched to Methotrexate and Celebrex 2 weeks > ago. No change so far. She had labs done last week and we should get > the results tomorrow. She goes to physical therapy once a week which > is just excrutiating for her and me. She has not had one symptom free > day since August. I was wondering if anyone had any luck with > alternative treatments. We are also looking into hydrotherapy. Any > suggestions/ advice would be greatly appreciated. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2009 Report Share Posted January 13, 2009 took pills and had success so we never needed to go to injections. I have heard from many here that injections give good results with less stomach problems. As had minimal nausea, it was not a concern for us. I do know the needles are small. I am sure they can train you to do it, or I have heard of some folks who have friends who are nurses who help them. Maybe that is a possibility if you switch? You are right about the eye dr - went every 3 months the first year, and then once clear for a year, he went every six months. Now since it has been 7 years clear (that was our eye drs criteria) he only needs to be checked once a year. is ANA positive too. had stomach issues and could not take naprosyn or ibuprofen so was given Celebrex for that reason. He had a lot less issues with his stomach on that. Finding the right combo of things does take time as you realize. I found that educating myself (and him) has been the best thing for us. I have learned so much over the years and this list has been one of my best sources, as you can see by the medical stuff Georgina recently posted and the personal experiences people post on. Michele (21, spondy) ________________________________ From: [mailto: ] On Behalf Of Crawford Sent: Monday, January 12, 2009 12:23 PM Subject: RE: new to group Thanks Michele. We go back to see her doctor March 6 so we are giving the medicine until then to start working. She has only had two doses of MTX so far. I am hopeful that since she was diagnosed so young that she will not have problems as an adult. The one thing I have learned over the last few months is that disease is unpredictable and seems to be so different in all kids. We have not discussed the steroid injections yet with her doctor but we will next time. She also said she could get her MTX through an injection if the pills did not work. Did you give the injections yourself. Our concern is that her doctor is an hour and a half away at The University of Florida so we can't go down there once a week for injections. She is high risk for eye inflammation because she is ANA positive so we go every three months to the opthamologist and so far so good. Even if she goes into remission we have to go see him every three months for four years.. I am worried about her little tummy with all this medicine. She is taking Prevacid and Zantac but she still says her tummy hurts sometimes. I have a feeling we are in for a long and bumpy ride. From: Tepper, Michele <MTepper@... <mailto:MTepper%40ftportfolios.com> > Subject: RE: new to group <mailto: %40> Date: Monday, January 12, 2009, 11:24 AM Hi, . Welcome to the group. It may take some time before you begin to notice any improvement in your daughter. She is taking the same combo of meds my son was on and they did work for him. He did max out on the Celebrex for awhile, before the mtx kicked in and we were able to begin to lower the Celebrex and eventually get him off. Then he was just on the MTX which worked well for him. It takes some kids 8 weeks or more on the mtx before a difference begins to be seen, plus as she grows she will need to have the dosage adjusted, especially in the beginning. If she is in extreme pain, you may want to look into joint injections. My son's JRA began as your daughter's is, pain in the ankle. At that time, joint injections were not often done, but now it seems more popular. The dr injects a steroid directly into the joint and some children get relief, at least for a while. This then gives the other meds a chance to get working. You may want to research that. The physical therapy is important, to help keep the joints loose, even if done for a short period of time. For my son, we would also work at home. One of the exercises the therapist had us do was every morning he would soak his foot/ankle in warm water and then I would help him to gently rotate the ankle. That did help. We had to get up a little earlier to make to school on time, but it was worth it. I would suggest also that you have her eyes checked for inflammation if you have not already. Pauci - articular girls are more likely to have uveitis. Also with the MTX she should be on folic acid (or take a multi vitamin that has it) to help minimize side effects. My son did not have too many, mostly mouth sores, and taking the folic acid helped. Please feel free to ask any questions you have. The parents here understand how you feel and know the frustration you have. Please let us know how she is doing, Michele ( 21, spondy) ____________ _________ _________ __ From: @group s.com [mailto: @group s.com] On Behalf Of Crawford Sent: Sunday, January 11, 2009 6:19 PM @group s.com Subject: new to group My name is and my 2 year old daughter was diagnosed with JRA in September. She only has her left ankle affected right now but it causes her extreme pain. She was on Naprosyn for 3 months with no relief. She has just switched to Methotrexate and Celebrex 2 weeks ago. No change so far. She had labs done last week and we should get the results tomorrow. She goes to physical therapy once a week which is just excrutiating for her and me. She has not had one symptom free day since August. I was wondering if anyone had any luck with alternative treatments. We are also looking into hydrotherapy. Any suggestions/ advice would be greatly appreciated. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2009 Report Share Posted January 13, 2009 , Reiki is just a very low-key form of energy healing. It's something anyone can learn to do and is often described by clients as very relaxing. Thanks for the black cherry & pomegranite juices tip. I'm very hesitant to put anything else in the mix - even when people swear by it like the friend of a friend and Super Greens. 's on Mtx, prevacid, meloxicam, folic acid, and flovent for asthma. But juice I can do! She'd love that!! Glad to hear that your daughter's labs are looking good - excluding the sed rate, and her range of motion is improving. I really hope you can post soon about how great she's doing. Good luck! Kirsten mom to , age 4, spondyloarthropathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2009 Report Share Posted January 24, 2009 Hi Colleen: Pat yourself on the back that you are taking increasing responsibility for your health. It's so important and you often have to swim against the current, as it were. But you will find information and support here. May I suggest that you review the getting started material? Just to make sure your diet is on track? You mention that you are taking caprylic acid, which is not necessary because it is synthesized from coconut oil which you should be taking 6 tablespoons of daily if you are ready for Oregano oil. So just review the diet and the steps with their proper order and we'll go from there, okay? We are here for you. http://www.healingnaturallybybee.com/articles/intro1.php All the best, Marissa > > Hello! > I am finally getting around to signing on and calling out for help. > I am extremely frustrated and at the threshhold of either refocusing > my diet after a bit of a " falling off of the wagon " , or just > abandoning it altogether, which I know I wont really do... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2009 Report Share Posted January 24, 2009 > > Hello! > I am finally getting around to signing on and calling out for help. > I am extremely frustrated and at the threshhold of either refocusing > my diet after a bit of a " falling off of the wagon " , or just > abandoning it altogether, which I know I wont really do... > I have had candida for at least 10 years, and possibly much longer. > I started with hashimotos 10 years ago, then became very sick to my > stomach after most meals. I got mentally scattered and lethargic- I > have always had belching, and then 8 years ago started with a small > rash on my abdomen which now covers my abdomen and has moved to my > armpits and groin area and under my breats. I have consulted with so > many doctors and noone can advise me of what that rash is, Im pretty > sure now its candida. +++Hi Colleen. Welcome to our group. That's great you've gotten started on the candida diet, but like Marissa wrote ensure you are on the " right " program by reading the 2 most important articles. +++You can be assured that all of your symptoms are caused by candida overgrowth, which interferes with digestion, puts out toxins that cause gas and bloating, causes hashimotos, fatigue, and rash or other skin eruptions which are toxins coming out through the skin, etc. > I started my diet in October and experienced terrible symptoms, pain in joints and muscles, cravings, headaches and intense anger at > times, not to mention a litte feeling sorry for myself. +++It is very miserable to go through die-off symptoms. The pains in your joints and muscles are caused by toxins, mainly from candida, and your other symptoms are typical for candida sufferers to go through when they start on the candida program. > My problem now is taht my most recent stool samples show no candida > in my GI tract, yet I still have my rash, achey joints and itchy > hands and feet. My naturopath thinks it may have left my GI tract > and is now residing somewhere else. WHERE? I am so discouraged, can anyone guide me? +++There are no tests that can be conclusive for candida; that's why only Dr. Crook's Candida Questionnaire is recommended. +++Your naturopath doesn't understand the nature of candida. Candida is normal throughout all mucus membranes in everyone, but under certain poor conditions in the body it changes and starts overgrowing in a monster. Candida cannot be cured by " killing it off " or " trying to get rid of it. " It doesn't work that way. The only way to cure it is by building up your immune system. You'll understand more after you read the key articles on my website. > I have just restarted oregano oil, and will switch to caprylic acid > for a week on week off rotation. I have been cheating and have lost > my confidence so am having a hard time justifying eating properly. > No hope, anyone got any to share? +++You do not need to do any kind of rotation on this program. That is a false idea that some people have about taking natural antifungals. +++Colleen, please read and then get back to us for help and support! You, too, can get healthy like myself and many other people have on this group. For encouragement see the many Success Stories: http://www.healingnaturallybybee.com/success/index.php The best in health, Bee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2009 Report Share Posted January 24, 2009 Ok, I have read some more, and printed alot of the info for further reading.. I did take the test, and my score was 36%- it was difficult due to the fact that i am 4 months into it, and alot of my symptoms have lessened, whereas others have increased. Ie, less belching and indegestion and abdominal pain, but much worse on the muscle and joint pain. Sometimes its hard to move and even type, especially upon waking. So, is 36% considered a definite positive? Colleen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2009 Report Share Posted January 25, 2009 > > Ok, I have read some more, and printed alot of the info for further reading.. I did take the test, and my score was 36%- it was difficult due to the fact that i am 4 months into it, and alot of my symptoms have lessened, whereas others have increased. Ie, less belching and indegestion and abdominal pain, but much worse on the muscle and joint pain. Sometimes its hard to move and even type, especially upon waking. > So, is 36% considered a definite positive? +++Hi Colleen. Yes, 36% is positive for candida. However, even if you didn't have candida your immune system is obviously very depressed. That's why this program is just as much a " healing program " as it is for candida sufferers. It is designed to build up your immune system and the functioning of the entire body so it will be healthy, according to Nature's Fundamentals Laws on health. Your muscle and joint pains are caused by toxins. the condition is usually called fibromyalgia or arthritis by doctors - see this article: http://www.healingnaturallybybee.com/articles/arth1.php The best, Bee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2009 Report Share Posted February 21, 2009 It sounds like its time to see a neuro surgeon......good luck also you might want to speak to doc about better pain control Deb RN From: neck pain [mailto:neck pain ] On Behalf Of peacenow56 Sent: Saturday, February 21, 2009 10:03 PM neck pain Subject: New to group Hello everyone, I am new to this group and am so glad I found it. I have suffered with neck and back problems for years and other orthopaedic afflictions.In fact I had one of the PAs at my doctors office tell me I am an orthopaedic wreck.It is good to get input from others who are going through the pain and depression that comes from a chronic condition.I am in the midst of what is my worst flare-up ever. It has been about three months now and very intense.I had an MRI two weeks ago that showed ruptured disk at c5-6 and bilateral foraminal spinal stenosis and arthritis.Is anyone familiar with this? I knew I had the disk problem, but it has gotten much worse.My doctor has me on antiinflammatory medication,muscle relaxers,Loritab 10mg,and prednisone,but I am still in pain.If anyone can offer some insight into what I may be facing I would certainly appreciate it.Hope to hear from you soon, peacenow Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2009 Report Share Posted February 21, 2009 It sounds like its time to see a neuro surgeon......good luck also you might want to speak to doc about better pain control Deb RN From: neck pain [mailto:neck pain ] On Behalf Of peacenow56 Sent: Saturday, February 21, 2009 10:03 PM neck pain Subject: New to group Hello everyone, I am new to this group and am so glad I found it. I have suffered with neck and back problems for years and other orthopaedic afflictions.In fact I had one of the PAs at my doctors office tell me I am an orthopaedic wreck.It is good to get input from others who are going through the pain and depression that comes from a chronic condition.I am in the midst of what is my worst flare-up ever. It has been about three months now and very intense.I had an MRI two weeks ago that showed ruptured disk at c5-6 and bilateral foraminal spinal stenosis and arthritis.Is anyone familiar with this? I knew I had the disk problem, but it has gotten much worse.My doctor has me on antiinflammatory medication,muscle relaxers,Loritab 10mg,and prednisone,but I am still in pain.If anyone can offer some insight into what I may be facing I would certainly appreciate it.Hope to hear from you soon, peacenow Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2009 Report Share Posted February 21, 2009 > > It sounds like its time to see a neuro surgeon......good luck also you > might want to speak to doc about better pain control > > Deb RN > > > > From: neck pain > [mailto:neck pain ] On Behalf Of peacenow56 > Sent: Saturday, February 21, 2009 10:03 PM > neck pain > Subject: New to group > > What would be a beter pain control? Thanks for your reply. peacenow > > Hello everyone, I am new to this group and am so glad I found it. I > have suffered with neck and back problems for years and other > orthopaedic afflictions.In fact I had one of the PAs at my doctors > office tell me I am an orthopaedic wreck.It is good to get input from > others who are going through the pain and depression that comes from a > chronic condition.I am in the midst of what is my worst flare-up ever. > It has been about three months now and very intense.I had an MRI two > weeks ago that showed ruptured disk at c5-6 and bilateral foraminal > spinal stenosis and arthritis.Is anyone familiar with this? I knew I > had the disk problem, but it has gotten much worse.My doctor has me on > antiinflammatory medication,muscle relaxers,Loritab 10mg,and > prednisone,but I am still in pain.If anyone can offer some insight > into what I may be facing I would certainly appreciate it.Hope to hear > from you soon, peacenow > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2009 Report Share Posted February 21, 2009 > > It sounds like its time to see a neuro surgeon......good luck also you > might want to speak to doc about better pain control > > Deb RN > > > > From: neck pain > [mailto:neck pain ] On Behalf Of peacenow56 > Sent: Saturday, February 21, 2009 10:03 PM > neck pain > Subject: New to group > > What would be a beter pain control? Thanks for your reply. peacenow > > Hello everyone, I am new to this group and am so glad I found it. I > have suffered with neck and back problems for years and other > orthopaedic afflictions.In fact I had one of the PAs at my doctors > office tell me I am an orthopaedic wreck.It is good to get input from > others who are going through the pain and depression that comes from a > chronic condition.I am in the midst of what is my worst flare-up ever. > It has been about three months now and very intense.I had an MRI two > weeks ago that showed ruptured disk at c5-6 and bilateral foraminal > spinal stenosis and arthritis.Is anyone familiar with this? I knew I > had the disk problem, but it has gotten much worse.My doctor has me on > antiinflammatory medication,muscle relaxers,Loritab 10mg,and > prednisone,but I am still in pain.If anyone can offer some insight > into what I may be facing I would certainly appreciate it.Hope to hear > from you soon, peacenow > > > > > > Quote Link to comment Share on other sites More sharing options...
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