Guest guest Posted August 1, 2004 Report Share Posted August 1, 2004 I had a flare up about a month after I started LDN too. BUT, it didn't last as long as my spring flare up usually does. And I suspect it was a couple of months in getting to the point where I had definable symptoms. So I believe the flare up was in progress when I started the LDN. I have definite improvements on LDN. Most important is my greatly improved bladder control. "Believing" I'm not wetting my pants won't keep them dry. Improved bladder control will... The bladder improvement is one of the easiest for all of us to quantify, and you'll find very many people in this group have had this particular improvement. LDN is worth it just for that... JT ----- Original Message ----- From: usaispy@... low dose naltrexone Sent: Sunday, August 01, 2004 1:08 PM Subject: [low dose naltrexone] (no subject) I, too, had an attack after taking LDN for 1 month and had to go on solumedrol for 5 days. I have not resumed taking LDN as I am having an operation shortly. I'm not convinced about it yet. Years ago I took a relative into Mexico for Laetrille treatment that everyone was raving about as a cure. That turned out not to work yet everybody believed they were feeling better, no more pain, blah blah blah...I just hope LDN doesn't fall into this same category. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2004 Report Share Posted August 2, 2004 By "everyone" raving just how many were there doing the raving?We have thousands now on LDN and sure some of us rave, but most just accept the good stuff that comes our way and enjoy. This is no snake oil.And it is no cure but it sure beats the hell out of injectables. Reg. -------Original Message------- From: low dose naltrexone Date: 08/01/04 14:09:28 low dose naltrexone Subject: [low dose naltrexone] (no subject) I, too, had an attack after taking LDN for 1 month and had to go on solumedrol for 5 days. I have not resumed taking LDN as I am having an operation shortly. I'm not convinced about it yet. Years ago I took a relative into Mexico for Laetrille treatment that everyone was raving about as a cure. That turned out not to work yet everybody believed they were feeling better, no more pain, blah blah blah...I just hope LDN doesn't fall into this same category. ____________________________________________________ IncrediMail - Email has finally evolved - Click Here Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2004 Report Share Posted August 31, 2004 Hi , I think I spoke to you before last fall. I am finished with my rebuilding process of my condo, but I do have photos of the whole thing. Judi On Aug 31, 2004, at 2:22 PM, MLMJ75@... wrote: > Is anyone in the process of tearing down his or her home due to mold > contamination? > > Mulvey son > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2004 Report Share Posted August 31, 2004 Hi , I think I spoke to you before last fall. I am finished with my rebuilding process of my condo, but I do have photos of the whole thing. Judi On Aug 31, 2004, at 2:22 PM, MLMJ75@... wrote: > Is anyone in the process of tearing down his or her home due to mold > contamination? > > Mulvey son > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2004 Report Share Posted September 2, 2004 QUACK !! Dr. RLS wrote: for the 4th time, unsubscribe me. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2004 Report Share Posted September 19, 2004 The peptide you refer to is a bad idea.. A Comment in: Nat Med. 2000 Oct;6(10):1098-100. Induction of a non-encephalitogenic type 2 T helper-cell autoimmune response in multiple sclerosis after administration of an altered peptide ligand in a placebo-controlled, randomized phase II trial. The Altered Peptide Ligand in Relapsing MS Study Group. Kappos L, Comi G, Panitch H, Oger J, Antel J, Conlon P, Steinman L. Department of Neurology, University Hospitals, sgraben 4, CH- 4031, Basel, Switzerland. In this 'double-blind', randomized, placebo-controlled phase II trial, we compared an altered peptide ligand of myelin basic protein with placebo, evaluating their safety and influence on magnetic resonance imaging in relapsing-remitting multiple sclerosis. A safety board suspended the trial because of hypersensitivity reactions in 9% of the patients. There were no increases in either clinical relapses or in new enhancing lesions in any patient, even those with hypersensitivity reactions. Secondary analysis of those patients completing the study showed that the volume and number of enhancing lesions were reduced at a dose of 5 mg. There was also a regulatory type 2 T helper-cell response to altered peptide ligand that cross-reacted with the native peptide. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2004 Report Share Posted November 19, 2004 Hi CJ, I'll keep you posted. Regards, Tom ----- Original Message ----- From: OldMSProCJ1@... low dose naltrexone Sent: Friday, November 19, 2004 8:45 AM Subject: [low dose naltrexone] (no subject) Tom,I think that is a very good idea. Go for it... No one that has MS understands each other very well.HugsCJMS is like a rollercoaster-It has its ups and downs. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 27, 2004 Report Share Posted December 27, 2004 Hang in there, Janet! You are not a complainer. You are a fighter! By telling what you are experiencing from this issue, you are helping to change the tide. Warm Regards, Sharon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 27, 2004 Report Share Posted December 27, 2004 Hang in there, Janet! You are not a complainer. You are a fighter! By telling what you are experiencing from this issue, you are helping to change the tide. Warm Regards, Sharon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 27, 2004 Report Share Posted December 27, 2004 In a message dated 12/27/2004 4:11:52 PM Pacific Standard Time, Gingersnap1964@... writes: Keep reacting. i am taking vitamins that have greatly reduced my MCS this is the name of them: Stress B-Complex _http://www.naturemade.com/ProductDatabase/prd_prod.asp?productid=76_ (http://www.naturemade.com/ProductDatabase/prd_prod.asp?productid=76) _www.naturemade.com_ (http://www.naturemade.com) they only cost about $9.00 a bottle and I think this is what helped get rid of about 80% of my MCS just recently (and quickly) Sue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 27, 2004 Report Share Posted December 27, 2004 In a message dated 12/27/2004 4:11:52 PM Pacific Standard Time, Gingersnap1964@... writes: Keep reacting. i am taking vitamins that have greatly reduced my MCS this is the name of them: Stress B-Complex _http://www.naturemade.com/ProductDatabase/prd_prod.asp?productid=76_ (http://www.naturemade.com/ProductDatabase/prd_prod.asp?productid=76) _www.naturemade.com_ (http://www.naturemade.com) they only cost about $9.00 a bottle and I think this is what helped get rid of about 80% of my MCS just recently (and quickly) Sue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2004 Report Share Posted December 28, 2004 Thanks guys Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2004 Report Share Posted December 28, 2004 Thanks guys Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2004 Report Share Posted December 28, 2004 Don't give up, sometimes these problems are sent to show the way for others. Your message tells others that they are not alone and you are not alone.I haven't got answers but I do have maybe's. I spent too many years arguing with everyone, one day during a lull in the fighting I recognised how much wasted time I had spent. I went a different route, stopped writing letters, threatening XYZ, I realised that nobody takes a threat seriously unless backed by a viable, likely and painful consequnece. From the day I realised this and stopped arguing and pointing out the problems I immedietly became positive and looked for solutions..Look for the self help. look for triggers, look for controls, look for advice, ask us lot in the group. Tell us what you think are the triggers, what is your environment like, wet, damp, moldy, wheat allergens, cleaning materials that may be triggers, could you make some areas of your home more controlled? Are you taking medicine? maybe the doc doesn't know that some antibiotics trigger yeast infections. Hey chin up, a New Year and new start days away. Jeff in London .. -----Original Message----- From: Gingersnap1964@... [mailto:Gingersnap1964@...] Sent: 28 December 2004 00:10 Subject: [] (no subject) Does anyone just get tired from all this? The constant pain, the reactions, no money to live on, being treated like a freak? I almost wonder why I am still here. I live in my apartment everyday. Go nowhere. Keep reacting. Keep getting yeast infections in my mouth. See no one.Doesnt it all seem too much sometimes? Fighting the government is like fighting a downhill battle as I got sick in a government building. My daughter needs her teeth fixed so I go without groceries for two weeks. Normally Im a fighter, not a complainer. But I have just about had it. Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2004 Report Share Posted December 28, 2004 Don't give up, sometimes these problems are sent to show the way for others. Your message tells others that they are not alone and you are not alone.I haven't got answers but I do have maybe's. I spent too many years arguing with everyone, one day during a lull in the fighting I recognised how much wasted time I had spent. I went a different route, stopped writing letters, threatening XYZ, I realised that nobody takes a threat seriously unless backed by a viable, likely and painful consequnece. From the day I realised this and stopped arguing and pointing out the problems I immedietly became positive and looked for solutions..Look for the self help. look for triggers, look for controls, look for advice, ask us lot in the group. Tell us what you think are the triggers, what is your environment like, wet, damp, moldy, wheat allergens, cleaning materials that may be triggers, could you make some areas of your home more controlled? Are you taking medicine? maybe the doc doesn't know that some antibiotics trigger yeast infections. Hey chin up, a New Year and new start days away. Jeff in London .. -----Original Message----- From: Gingersnap1964@... [mailto:Gingersnap1964@...] Sent: 28 December 2004 00:10 Subject: [] (no subject) Does anyone just get tired from all this? The constant pain, the reactions, no money to live on, being treated like a freak? I almost wonder why I am still here. I live in my apartment everyday. Go nowhere. Keep reacting. Keep getting yeast infections in my mouth. See no one.Doesnt it all seem too much sometimes? Fighting the government is like fighting a downhill battle as I got sick in a government building. My daughter needs her teeth fixed so I go without groceries for two weeks. Normally Im a fighter, not a complainer. But I have just about had it. Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2006 Report Share Posted November 9, 2006 Tell him you are expected to be on these drugs for years and will do anything you have to in order to live a decent quality of life. Then demand a complete copy of your medical records (every last one!!) Time to play it tough! mtmaynor@... wrote: I have a visit to my oncologist next week. In the past, he has minimized my side effects and while he is nice and supportive, I feel belittled when I mention the different side effects I have. Do any of you have recommendations on how I can present it to him, to get a more satisfactory response. Often, he is not sure what to do and confers via e-mail with Dr. Francis Giles and MD . One thought is to email him a list and frequency of the side effects and give him time to confer with Dr. Giles before my appointment. Another is just to write down everything, giving it a pain number from 1-10 (10 being the worst) and discussing it with him there. Unfortunately, both my father (who is 81) and my wife are adamant that I get some sort of relief from my side effects or switch to Sprycel. Any ideas would be helpful. With warm regards, Matt ville, FL DX January of 2005 Gleevec Since May 2005 Father of 3 mtmaynor@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2006 Report Share Posted November 9, 2006 I'm planning on writing down all my negative side-effects (large font) and if my onc is condescending to me again, I will remind him that there are two medications approved for the treatment of our CML, one of which I will probably be taking for life and that quality of life issues are indeed very important at this point. I think some doctors just lose their sensitivity due to all the complaints that they have to listen to. I left his office last time saying " I wonder how you would feel if you had to deal with shortness of breath and possible pleural effusion? " . Jane >From: mtmaynor@... >Reply- > >Subject: [ ] (no subject) >Date: Thu, 9 Nov 2006 10:31:46 EST > >I have a visit to my oncologist next week. In the past, he has minimized >my >side effects and while he is nice and supportive, I feel belittled when I >mention the different side effects I have. Do any of you have >recommendations >on how I can present it to him, to get a more satisfactory response. > >Often, he is not sure what to do and confers via e-mail with Dr. Francis >Giles and MD . One thought is to email him a list and frequency of > the >side effects and give him time to confer with Dr. Giles before my >appointment. Another is just to write down everything, giving it a pain >number from >1-10 (10 being the worst) and discussing it with him there. >Unfortunately, both >my father (who is 81) and my wife are adamant that I get some sort of >relief >from my side effects or switch to Sprycel. > >Any ideas would be helpful. > >With warm regards, >Matt >ville, FL >DX January of 2005 >Gleevec Since May 2005 >Father of 3 >mtmaynor@... > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2006 Report Share Posted November 9, 2006 Hi, Tell your doctor that you need to discuss the side effects and that you're concerned that he's not aware of how much of an impact they really are having on your life. I would suggest that you be sure to explain exactly how the side effects are disrupting your daily activities. Do they prevent you from doing anything? Do they interfere with your enjoyment of doing anything? Make a list of what is impacted and how that affects your well being. Also, lay out what you expect from him. What DO you expect him to do about the side effects? Do you just want acknowledgement or do you expect something to be done about them? Do you want a medication for the side effects? I imagine you have tried to manage the side effects on your own, right? Tell him what you have tried and why it hasn't worked. You can always talk about switching to the new medication. But is that really what you want to do? Keep in mind that the new drug, Sprycel, is even newer than Gleevec with perhaps even less known about the dangers and side effects. And it may cause a whole new set of problems for you. My doctor at the Mayo Clinic advised against switching to it until more is known about its side effects and health risks. There are still new problems coming out about Gleevec, nearly six years after it was approved. On the other hand, it continues to have a good track record in inducing remissions. Are you prepared to possibly sacrifice that? G. www.upstairswindow.org www.cmlsupport.com [ ] (no subject) I have a visit to my oncologist next week. In the past, he has minimized my side effects and while he is nice and supportive, I feel belittled when I mention the different side effects I have. Do any of you have recommendations on how I can present it to him, to get a more satisfactory response. Often, he is not sure what to do and confers via e-mail with Dr. Francis Giles and MD . One thought is to email him a list and frequency of the side effects and give him time to confer with Dr. Giles before my appointment. Another is just to write down everything, giving it a pain number from 1-10 (10 being the worst) and discussing it with him there. Unfortunately, both my father (who is 81) and my wife are adamant that I get some sort of relief from my side effects or switch to Sprycel. Any ideas would be helpful. With warm regards, Matt ville, FL DX January of 2005 Gleevec Since May 2005 Father of 3 mtmaynoraol (DOT) <mailto:mtmaynor%40aol.com> com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2006 Report Share Posted November 10, 2006 At 01:28 PM 11/9/06 -0600, you wrote: >You can always talk about switching to the new medication. But is that >really what you want to do? Keep in mind that the new drug, Sprycel, is even >newer than Gleevec with perhaps even less known about the dangers and side >effects. And it may cause a whole new set of problems for you. My doctor at >the Mayo Clinic advised against switching to it until more is known about >its side effects and health risks. There are still new problems coming out >about Gleevec, nearly six years after it was approved. On the other hand, it >continues to have a good track record in inducing remissions. Are you >prepared to possibly sacrifice that? Hi Matt, On Jerry's website www.newcmldrug.com there is a discussion group for Sprycel........... " Sprycel Talk " Most people, because it was a trial requirement, switched to Sprycel because of bad side effects with Gleevec (skin rash or other problems) or suboptimal response to Gleevec. I have been on Sprycel for one year because of suboptimal response to IM which I was on for about 5.5 years (I tolerated Gleevec well). I recently had a follow-up with Dr. Druker and his opinion was: Gleevec is probably a safer drug (fewer medically significant side effects) and Sprycel is probably a more effective drug (but if you have a good response on IM, then that is not the issue). The biggest problem with Sprycel is PE (pulmonary edema) is about 15% of those on 100mg/day and 20% of those on 140mg/day. Many people on Jerry's list who have switched from Gleevec to Sprycel claim that they have much fewer side effects on Sprycel than they did on Gleevec and that they feel better (less fatigue, etc). So I think the issue for you is how bad are the side effects and have you tried to address them but not been successful??? You can always try Sprycel and still return to Gleevec. C. PS I am getting a better cyto response on Sprycel........I started the trial at 35% ph+ and now (at one year) am down to my lowest ever.....10% ph+ cyto, 9% FISH. (I am a slow responder!!....but my CML is very stable). Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2006 Report Share Posted November 10, 2006 I am getting a better cyto response on Sprycel........I started the > trial at 35% ph+ and now (at one year) am down to my lowest ever.....10% > ph+ cyto, 9% FISH. (I am a slow responder!!....but my CML is very stable). > ************************************ What wonderful news ! I'm envisioning a big fat zero for you (and ) very soon! Tracey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2011 Report Share Posted February 7, 2011 My dearest wife really helped me with antiviruses! Here is the web site.....! Just look at it! http://orecinternational.org/images/asa.php Quote Link to comment Share on other sites More sharing options...
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