Guest guest Posted November 8, 2008 Report Share Posted November 8, 2008 Hi Everyone, I have an inquiry regarding taking LDN with Tysabri. It is my understanding that they should not be taken together. Does anyone have anything more to add regarding combing these two meds. Also, has there been any new information regarding how people are doing with Tysabri? All my best, Aletha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2008 Report Share Posted November 8, 2008 Hi Aletha, I have heard that it shouldn't be taken with LDN, also. I had sought out Tysabri in January of 2005, when it first came out and it " fixed " me dramatically, within days....no more cane, balance problems or fatigue. I had to stop in March of 2005, when they discontinued it but felt so good that I went medication free until January of 2007, while I had my son. When the post-labor hormone trip started the pregression slide that I am still on, I went back onto Tysabri with no apparent benefit this time. That is why I finally gave up on it this last August in favor of LDN. I am having an annual follow up MRI tomorrow, so it will be interesting to see what in the world is going on. I will let you all know about those findings and also the results of the Lyme testing that I am doing in about a week. I guess we all have to keep searching! Have a great weekend, Brynn > > Hi Everyone, > > I have an inquiry regarding taking LDN with Tysabri. It is my > understanding that they should not be taken together. Does anyone have > anything more to add regarding combing these two meds. Also, has there > been any new information regarding how people are doing with Tysabri? > > All my best, Aletha > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2008 Report Share Posted November 9, 2008 Aletha— I started on LDN one week after my 8th Tysabri injection. I had had good luck with Tysabri (mostly with spasticity relief) but was getting nervous about PML (for good reason, I think!). A friend had just read about LDN (bless her heart) and the lack of serious side effects was VERY appealing, not to mention possible improvement. After reading about how the two can interact (lessening the potential of LDN), and having just heard my neuro say it took over two months for the Tysabri to clear out of the system, I didn’t expect to see ANY improvement for at least 2 months, so my expectation starting out was very low. Imagine my shocked surprise to see improvement (mostly in bladder control and clearer thinking) IMMEDIATELY. Then saw more improvement (in spasticity and balance) a month or so later. Is it ALL the time? No. But I see any moment of relief a genuine gift. And there have been hours of pretty serious improvement. Remarkably enough, I was having one of those moments when I saw my neuro 2 months into LDN. There was no way he could deny my improvement, and imagine my delight to hear him say he was getting tired of having MS patients come in saying “If Debbie is on it, I want to be, too” (this was said with VERY good nature—he’s thrilled to see my improvement!). Can you expect the same? Who knows? But the potential is out there. The best of luck to you—let us know how you are doing. Debbie From: low dose naltrexone [mailto:low dose naltrexone ] On Behalf Of wittmann.aletha Sent: Saturday, November 08, 2008 1:06 AM To: low dose naltrexone Subject: [low dose naltrexone] LDN and Tysabri Hi Everyone, I have an inquiry regarding taking LDN with Tysabri. It is my understanding that they should not be taken together. Does anyone have anything more to add regarding combing these two meds. Also, has there been any new information regarding how people are doing with Tysabri? All my best, Aletha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2008 Report Share Posted November 9, 2008 Thank you everyone for the replies to Tysabri, Debbie, I am sorry I should have explained why I was asking. It is for someone that is giving LDN to his wife and at first she was doing great, and is doing OK right now, but not as good as they would like to see on it. Their doctor is trying to get her on Tysabri. So I was inquiring for them. My husband has been on LDN now for almost 4 years and is doing fabulous. Sorry to have confused you. I have forwarded on your replies to the person that inquired. All my best Aletha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2009 Report Share Posted May 12, 2009 As I have said many times before, anytime someone has a negative reaction to LDN the first question I would ask is, " What is the diet like? " If I had a disease such as ALS or MS, I would be more than willing to see if my dietary exogenous opioids could be causing the negative reaction to a drug that is helping most of these people get off all their other drugs without progression of their disease. The reason this is a worthwhile trial is that this intolerance is affecting their general health and immunity in a negative way. Unfortunately, sometimes it takes up to 6 months to get gluten out of the system, so it is not so easy to test. Celiac disease (allergy to gluten protein) which most people do not know does not come in an " all or none " fashion; there are many degrees of celiac intolerance. Untold numbers of people eat wheat since it is a staple food in our society and never feel good - they have indigestion, stool irregularities, weight issues, and never know that if they would eliminate wheat and casein they would feel like new people. Many people who eat wheat and milk do not even know what " feeling good " is like until they remove these foods from their diet. As I have said many times befor, anytime someone has a negative reaction to LDN the first question I would ask is, " What is the diet like? " Dr. JM MORE BELOW The only way to know for sure if you have candida yeast overgrowth is to get a urinary dysbiosis test (measures by-products of yeast in the urine) - stool tests can often miss yeast, but the urine will show it. This is part of the Organic Acid Test (OAT) and is done by Metametrix, Great Plains, and Genova Labs - it must be ordered by a physician. The entire OAT (metametrix calls it Organix) tells you what vitamins you are missing and is a very good guage of your overall metabolic process, including toxicities and deficiencies. The dysbiosis part only measure the by-products of yeast and bacteria, and does not cost as much as the full test. This is one of the routine tests I get on all children with autism, as they have many metabolic disorders and most have yeast and bacteria and need to be treated for this to help them improve their health. Dr. JM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2009 Report Share Posted May 12, 2009 Tysabri is an awesome drug that is way, way over blown in the PML department by Food Dummie A-Holes. 1.2 in 10,000 patients and it gets better and better as time accumulates the data. Biogen exploited the PML cases and blamed it on Elan and Tysabri. All cases but one was in cotherapy with avonex. They knew they were losing market share to Ty. Their avonex has one third the efficacy. The other was severely immuno suppressed. I have had 19 doses and feel normal like a million bucks. No progression in my MRI. Just regression of the disease process. FDA says 1 in 1000 chance what a joke. FDA, SEC a bunch of crooked paid for scammers. ABCR's are gonners and lost a long time ago. Its just trurf wars now. I started Ty as a first line therapy because I have been a researcher for years prior in this field. I knew what was the best and that it can be first line therapy. I am in the drivers seat not my neuro. In fact he has never even heard of LDN, what gives? Matt [low dose naltrexone] Re: LDN and Tysabri As I have said many times before, anytime someone has a negative reaction to LDN the first question I would ask is, "What is the diet like?" If I had a disease such as ALS or MS, I would be more than willing to see if my dietary exogenous opioids could be causing the negative reaction to a drug that is helping most of these people get off all their other drugs without progression of their disease. The reason this is a worthwhile trial is that this intolerance is affecting their general health and immunity in a negative way. Unfortunately, sometimes it takes up to 6 months to get gluten out of the system, so it is not so easy to test. Celiac disease (allergy to gluten protein) which most people do not know does not come in an "all or none" fashion; there are many degrees of celiac intolerance. Untold numbers of people eat wheat since it is a staple food in our society and never feel good - they have indigestion, stool irregularities, weight issues, and never know that if they would eliminate wheat and casein they would feel like new people. Many people who eat wheat and milk do not even know what "feeling good" is like until they remove these foods from their diet. As I have said many times befor, anytime someone has a negative reaction to LDN the first question I would ask is, "What is the diet like?" Dr. JM MORE BELOW The only way to know for sure if you have candida yeast overgrowth is to get a urinary dysbiosis test (measures by-products of yeast in the urine) - stool tests can often miss yeast, but the urine will show it. This is part of the Organic Acid Test (OAT) and is done by Metametrix, Great Plains, and Genova Labs - it must be ordered by a physician. The entire OAT (metametrix calls it Organix) tells you what vitamins you are missing and is a very good guage of your overall metabolic process, including toxicities and deficiencies. The dysbiosis part only measure the by-products of yeast and bacteria, and does not cost as much as the full test. This is one of the routine tests I get on all children with autism, as they have many metabolic disorders and most have yeast and bacteria and need to be treated for this to help them improve their health. Dr. JM ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2009 Report Share Posted May 12, 2009 Art, Thats a good question. I was thinking of it but I am doing so well on TY. If insurance issues come up or if a start having trouble I may. Right now I am reading some negatives after all the positives I first heard of. I am kinda scared to try plus its alot of work to get going on it. I think Its best I am slow this time. What I really want is a stem cell transplant from costa rica by cell medicine. Thats 20K for me, so thats a tuff one. I think I will let everything ride another year. If my doc suggest and pushes hard for drug holiday then my options will get closer to one or both options. Right now if it aint broke dont fix it is my attitude. Thanks for question Matt [low dose naltrexone] Re: LDN and Tysabri Do you plan on trying LDN or will you stay on Tysabri? Art --- > > Tysabri is an awesome drug that is way, way over blown in the PML department by Food Dummie A-Holes. 1.2 in 10,000 patients and it gets better and better as time accumulates the data. Biogen exploited the PML cases and blamed it on Elan and Tysabri. All cases but one was in cotherapy with avonex. They knew they were losing market share?to Ty. Their avonex has?one third the efficacy.?The other was severely immuno suppressed.?I have had 19 doses and feel normal like a million bucks. No progression in my MRI. Just regression of the disease process. FDA says 1 in 1000 chance what a joke. FDA, SEC a bunch of? crooked paid for scammers. ABCR's are gonners and lost a long time ago. Its just trurf wars now. I started Ty as a?first line therapy because I have been a researcher for years prior in this field. I knew what was the best and that it can be first line therapy. I am in the drivers seat not my neuro. In fact he has never even heard of LDN, what?gives? > > ? Matt ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2009 Report Share Posted May 12, 2009 Mat, I'm a little unclear on a couple of things in your post below. First, are you still taking Tysabri or did you take 19 doses and stop? Second, are you also taking LDN? If you took both Tysabri and LDN at the same time, did you start on LDN first and then Tysabri or Tysabri first and then LDN. I'm not sure if that's important, but I'd like to know all the facts about your history with these meds and the benefits you now enjoy. A nurse in the hospital where I work part-time could not stop talking about how Tysabri helped her sister with MS who couldn't walk. After taking the drug she began to walk and lead a normal life. I past that information on to my brother-in-law who is now intererested in pursuing Tysabri. Is a bed-ridden life worth NOT taking any risks? Thanks for your feedback. Elliot <<< Posted by: "NoMatchoo@..." NoMatchoo@... bubbabean11 Mon May 11, 2009 5:56 pm (PDT) Tysabri is an awesome drug that is way, way over blown in the PML department by Food Dummie A-Holes. 1.2 in 10,000 patients and it gets better and better as time accumulates the data. Biogen exploited the PML cases and blamed it on Elan and Tysabri. All cases but one was in cotherapy with avonex. They knew they were losing market share?to Ty. Their avonex has?one third the efficacy.?The other was severely immuno suppressed.? I have had 19 doses and feel normal like a million bucks. No progression in my MRI. Just regression of the disease process. FDA says 1 in 1000 chance what a joke. FDA, SEC a bunch of? crooked paid for scammers. ABCR's are gonners and lost a long time ago. Its just trurf wars now. I started Ty as a?first line therapy because I have been a researcher for years prior in this field. I knew what was the best and that it can be first line therapy. I am in the drivers seat not my neuro. In fact he has never even heard of LDN, what?gives?? Matt >>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2009 Report Share Posted May 12, 2009 Elliot, NO LDN just researching but thinking I wont due to side effects...I have taken 19 doses of tysabri and by the third dose you really start to feel much, much better,,,The next step for me is stem cells in costa rica...I here people are doing great with that...but thats a year away...why mess with a good thing.....let them perfect more and more.... http://www.ilovemynewstemcells.com/3/quanda.htm Avonex / Interferon beta-1a Updated September 2007- The U.S. Food and Drug Administration (FDA) approved Avonex, also known as interferon beta-1a, in 1996 for the treatment of relapsing forms of multiple sclerosis. Multiple sclerosis (MS) is a chronic, often disabling, disease of the central nervous system that occurs when the protective sheath surrounding nerve fibers breaks down. Approximately 30 percent of MS patients suffer from a relapsing-remitting form of the disease in which symptoms can diminish or disappear for months or years between flare-ups. Although the cause of MS is unknown, it is widely considered an autoimmune disease. Avonex is a genetically engineered form of a naturally occurring protein in the body that is considered vital to immune functions. The medication slows the build-up of physical disability and decreases the frequency of exacerbations of MS. Avonex, injected into a large muscle (such as your buttock or hip) once a week, is made by Biogen Incorporated. In February 2003, Avonex was approved by the FDA as an early treatment for MS. Side effects of Avonex include, but may not be limited to, flu-like symptoms, fever, fatigue, headache, chills, nausea, vomiting and depression. In February 2003, the FDA asked Biogen Inc. to notify physicians of the drug's link to two rare blood diseases. According to the FDA, a small number of Avonex patients have developed pancytopenia, a disorder in which bone marrow has difficulty making red blood cells, and thrombocytopenia, a persistent decrease in the number of blood platelets. Biogen, of Cambridge, Mass., plans to change Avonex's label to warn of the medication's link to the two disorders. In March 2003, Biogen and FDA revised the WARNINGS, PRECAUTIONS, ADVERSE REACTIONS, PATIENT INFORMATION, and CLINICAL STUDIES sections of the prescribing information to include important new safety information and a patient Medication Guide. Updated safety information includes a cautionary note regarding use in patients with depression and other severe psychiatric symptoms. Post-marketing reports of depression, suicidal ideation and/or development of new or worsening of pre-existing psychiatric disorders, including psychosis, and reports of anaphylaxis, pancytopenia, thrombocytopenia, autoimmune disorders of multiple target organs, and hepatic injury manifesting itself as elevated serum enzyme levels and hepatitis were added to the labeling. An FDA-approved Patient Medication Guide, providing important patient safety information and comprehensive instructions for patient self-administration of Avonex, was added. In March 2005, FDA and Biogen notified healthcare professionals of revisions to the WARNINGS, PRECAUTIONS/Drug Interactions and ADVERSE REACTIONS/Post-Marketing Experience sections and Medication Guide. Severe hepatic injury, including cases of hepatic failure, has been reported in patients taking Avonex. Asymptomatic elevation of hepatic transaminases has also been reported, and in some patients has recurred upon rechallenge. In some cases, these events have occurred in the presence of other drugs that have been associated with hepatic injury. The potential risk of Avonex used in combination with known hepatotoxic drugs or other products (e.g. alcohol) should be considered prior to Avonex administration, or when adding new agents to the regimen of patients already on Avonex. In 2007, the Institute for Safe Medication Practices and the Division of Public Health Sciences, Wake Forest University School of Medicine, conducted a longitudinal Adverse Events Reporting System Review of the U.S. FDA's most dangerous drugs. The study found interferon beta to be one of the most dangerous drugs on the market with some of the highest number of suspect drug deaths. Interferon beta was the eighth deadliest drug, according to the FDA reports. Over the eight years of the study, interferon beta was found to have over 1,100 deaths in an 8-year period. Interferon beta was also the fourth highest tally in the study in serious drug outcomes or disability. According to FDA reports, there were over 8,300 adverse drug incidents involving interferon beta. See your doctor if you have experienced serious side effects associated with Avonex. In addition, it may be important to contact an attorney who can help you protect your legal rights. Please keep in mind that there may be time limits within which you must commence suit. Attorneys associated with InjuryBoard.com will evaluate your case free of charge. In addition, you will not pay any fees or costs unless your attorney recovers money for you. Please click on the free Ask An Attorney button to take advantage of this valuable service. RELATED TOPICS Multiple Sclerosis Drugs RELATED INJURIES Blood Disorders: Overview Depression: Overview Fatigue: Overview Headaches Liver Failure: Overview Nausea: Overview [low dose naltrexone] re: LDN and Tysabri Mat, I'm a little unclear on a couple of things in your post below. First, are you still taking Tysabri or did you take 19 doses and stop? Second, are you also taking LDN? If you took both Tysabri and LDN at the same time, did you start on LDN first and then Tysabri or Tysabri first and then LDN. I'm not sure if that's important, but I'd like to know all the facts about your history with these meds and the benefits you now enjoy. A nurse in the hospital where I work part-time could not stop talking about how Tysabri helped her sister with MS who couldn't walk. After taking the drug she began to walk and lead a normal life. I past that information on to my brother-in-law who is now intererested in pursuing Tysabri. Is a bed-ridden life worth NOT taking any risks? Thanks for your feedback. Elliot <<< Posted by: "NoMatchoo@..." NoMatchoo@... bubbabean11 Mon May 11, 2009 5:56 pm (PDT) Tysabri is an awesome drug that is way, way over blown in the PML department by Food Dummie A-Holes. 1.2 in 10,000 patients and it gets better and better as time accumulates the data. Biogen exploited the PML cases and blamed it on Elan and Tysabri. All cases but one was in cotherapy with avonex. They knew they were losing market share?to Ty. Their avonex has?one third the efficacy.?The other was severely immuno suppressed.? I have had 19 doses and feel normal like a million bucks. No progression in my MRI. Just regression of the disease process. FDA says 1 in 1000 chance what a joke. FDA, SEC a bunch of? crooked paid for scammers. ABCR's are gonners and lost a long time ago. Its just trurf wars now. I started Ty as a?first line therapy because I have been a researcher for years prior in this field. I knew what was the best and that it can be first line therapy. I am in the drivers seat not my neuro. In fact he has never even heard of LDN, what?gives? ? Matt >>> We found the real 'Hotel California' and the 'Seinfeld' diner. What will you find? Explore WhereItsAt.com. Quote Link to comment Share on other sites More sharing options...
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