Guest guest Posted January 4, 2011 Report Share Posted January 4, 2011 Hi Tim, Personally, I would not touch Tysabri. I have SPMS and have stopped the progression and reversed my symptoms. And I have never touched any typical MS drugs. I use diet, herbs, supplements, detox, meditation, exercise, and intermittent LDN to manage the ms. Have you been screened for CSSVI? What's your diet look like? Have you tried herbs, vitamin and mineral supplements? What about detoxification? How much water do you drink a day, and what is the quality of that water? Have you researched LDN? Have you done an elimination diet to check for food sensitivities? What does your vitamin/mineral blood work look like? What about heavy metals? MS can be managed/treated/overcome.. but you have to research and try things to find the right combination for you. One theory is that there are many causes of the condition we call multiple sclerosis. You may never really find your exact cause, but with some trial and error, and a LOT of perseverance, you can find those natural treatments that will work for you. There are many of us here, including myself who have stopped progression, regained function, and/or stopped relapses without the standard ms drugs. They are dangerous, and rarely effective. Yvette > > > Hi gang. Happy new year! > > My Nuero wants me to go on Tysabri. I am afraid to do it because the side > effects are deadly and the positive effects are a " maybe " . This after he > looked at my new MRI and showed me that I have no new lesions after 2 years > but the three spinal lesions have swelled somewhat - not very significantly. > > Even the Tysabri web site (Pharma sponsored) says that is is not a cure and > that risks of death or serious disability are real. > > Do any of you have experience with Tysabri. I want your opinions. > > Thank you. > > Best regards, > Tim > > > -- Yvette Freelance Writer Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2011 Report Share Posted January 4, 2011 I agree with Yvette. There are so many things you can do to help your MS that are prob better and safer than tysabri. Dont feel obligated to take the drugs your doctor prescribes. Just say no if you want. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2011 Report Share Posted January 4, 2011 If your dr. insists, you can always look for a new dr.. or go it alone and do your own research. Which is what I have had to do. When I moved from Az to Ne 3 years ago, I could not find a neuro in Nebraska willing to treat me if I refused standard drugs. So, I gave up the neuro, and do my own research. I'm healthier for it. Doctors recommend drugs from the companies that give them perks.. and those are not always (okay.. usually NOT) the best med for the patient. i have a general doctor that we use if someone gets sick. He's a family practice natuopath and we've used him exactly once in 3 years. I am currently studying to become a traditional naturopath so I have more tools to keep my family healthy without standard medicine. The class I'm taking is free if you want it to be.. You pay only for the diploma at the end of your courses. Yvette > > > I agree with Yvette. > > There are so many things you can do to help your MS > that are prob better and safer than tysabri. > > Dont feel obligated to take the drugs your doctor prescribes. > Just say no if you want. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2011 Report Share Posted January 4, 2011 A fellow MS to Lyme person I had met on PLM was on Tysbari for a while. She had many problems with the drug. Amongst the problems lesions forming on her body and even problems with her gall bladder. One report I got from UpToDate reported the time between MS diagnosis and use of a cane to be 26 years. It seems that these powerful CRAG+T drugs are only listed to slow down the rate of exacerbations. REALLY wish I'd skipped the Rebif myself. > > Hi gang. Happy new year! > > My Nuero wants me to go on Tysabri. I am afraid to do it because the side effects are deadly and the positive effects are a " maybe " . This after he looked at my new MRI and showed me that I have no new lesions after 2 years but the three spinal lesions have swelled somewhat - not very significantly. > > Even the Tysabri web site (Pharma sponsored) says that is is not a cure and that risks of death or serious disability are real. > > Do any of you have experience with Tysabri. I want your opinions. > > Thank you. > > Best regards, > Tim > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2011 Report Share Posted January 5, 2011 My nuero does not like Tysabri. He does not thing the odds justify the means. My nuero is not like a lot of others. He doesnt go with the flow and is very much encouraging the natrual way of doing things. I've never been on Tysabri, but have heard way too many bad things about it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2011 Report Share Posted January 5, 2011 Hi Tim, Sorry, no experience with Tysabri, or any other Big Pharma drug. My neuro just wanted me to do the same. Instead I went privately and got CCSVI treatment. The neuro has seen how I am now, has seen how I am improved and was still trying to push his Tysabri. He said CCSVI treatment was only placebo and he would not condone any of his patients having it but thought they should all be given the " benefit " of trying Tysabri. He admitted that no MS drug does anything but that Tysabri does help lengthen times between relapses (I have PPMS and have never had a relapse). But look at those figures - something like 79 cases of PML and deaths in the teens. The odds are too high for me. Maybe they are getting extra sales perks on it! Why on earth would you elect to go on something potentially fatal when your MRI shows your body is doing just fine by itself! If you were at death's door anyway that would be the only reason - and even then I'd resist. I got rid of my neuro - far better decision. Janet To: mscured From: tloftus@... Date: Wed, 5 Jan 2011 01:30:50 +0000 Subject: Tysabri. Evil? Hi gang. Happy new year! My Nuero wants me to go on Tysabri. I am afraid to do it because the side effects are deadly and the positive effects are a " maybe " . This after he looked at my new MRI and showed me that I have no new lesions after 2 years but the three spinal lesions have swelled somewhat - not very significantly. Even the Tysabri web site (Pharma sponsored) says that is is not a cure and that risks of death or serious disability are real. Do any of you have experience with Tysabri. I want your opinions. Thank you. Best regards, Tim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2011 Report Share Posted January 5, 2011 Thank you. I will not be getting Tysabri treatments. This is the fourth Nuero in three years. This one is better than previous Drs. Next time I see him (appointment in April after my 2nd scheduled Tysabri treatment!), I will ask him why he would put me on Tysabri when we (he and I) have seen that PPMS progression has about halted and I have been off the Copaxone for 6 months. I will ask him what we can do to help me get better (PPMS symptoms). Weather I continue to see him, will depend on his answers. I suspect you are correct in saying that my welfare is not his primary goal. I am scheduled for CCSVI screening tomorrow, 1/6. I have been on the Swank MS diet for over 6 months and am really happy with results. My blood work has improved and continues to show improvement. I get it tested every three months with my Holistic GP. Thank you, thank you, thank you. Best wishes to all for a wonderful 2011, Tim > > > Hi Tim, > Sorry, no experience with Tysabri, or any other Big Pharma drug. > My neuro just wanted me to do the same. > Instead I went privately and got CCSVI treatment. > The neuro has seen how I am now, has seen how I am improved and was still trying to push his Tysabri. > He said CCSVI treatment was only placebo and he would not condone any of his patients having it but thought they should all be given the " benefit " of trying Tysabri. > He admitted that no MS drug does anything but that Tysabri does help lengthen times between relapses (I have PPMS and have never had a relapse). But look at those figures - something like 79 cases of PML and deaths in the teens. The odds are too high for me. > > Maybe they are getting extra sales perks on it! > Why on earth would you elect to go on something potentially fatal when your MRI shows your body is doing just fine by itself! > If you were at death's door anyway that would be the only reason - and even then I'd resist. > I got rid of my neuro - far better decision. > Janet > > > To: mscured > From: tloftus@... > Date: Wed, 5 Jan 2011 01:30:50 +0000 > Subject: Tysabri. Evil? > > > > > > > Hi gang. Happy new year! > > My Nuero wants me to go on Tysabri. I am afraid to do it because the side effects are deadly and the positive effects are a " maybe " . This after he looked at my new MRI and showed me that I have no new lesions after 2 years but the three spinal lesions have swelled somewhat - not very significantly. > > Even the Tysabri web site (Pharma sponsored) says that is is not a cure and that risks of death or serious disability are real. > > Do any of you have experience with Tysabri. I want your opinions. > > Thank you. > > Best regards, > Tim > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2011 Report Share Posted January 5, 2011 Hi Tim I reckon you probably know already what MY answer will be!! No way would I ever try it and my Neuro offered, but agreed that I'd probably be one of the 'unlucky' ones in regards to PML and death! He REALLY has been great and is very supportive of my having had the CCSVI procedure and is now helping me get back on my feet again with referring me to a physio. He's also in supportof me getting to a chiropractor too as he agrees that having walked weirdly for so long, would have put me all out of shape. 'What we do in life, echoes through eternity.' MARCUS AURELIUS (121 - 180 A.D.) > To: mscured > From: janetorchard@... > Date: Wed, 5 Jan 2011 15:50:29 +0100 > Subject: RE: Tysabri. Evil? > > > Hi Tim, > Sorry, no experience with Tysabri, or any other Big Pharma drug. > My neuro just wanted me to do the same. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2011 Report Share Posted January 5, 2011 Tim you are correct in saying that your welfare is not your dr. primary goal. that is exactly the problem. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2011 Report Share Posted January 5, 2011 I've had TWO neurologists. After I realized that the Rebif was making me worse, asked neuro #1 for LDN. He commented he'd had a dozen patients try it. " It wasn't a good experience for anybody " . Did Copaxone for a year after that. Neurologist #2 felt I should try Betaseron. I felt that because the two seemed to have the same active ingredient, I declined. Then switched to my alternative physician, and did LDN for a year. Felt that wasn't doing much for me, and started the German drug calcium ethyl amino phosphate (EAP) for one year. Was still losing strength, after much library studying, felt Lyme disease was a better description of my sickness. Hired my first Lyme Literate Medical Doctor (LLMD). Had a clinical diagnosis that was confirmed w/ my herxheimer reactions to doxycycline. Up to LLMD #3 now. Feel that since the CRAB+T drugs are FDA approved, our neurologists " should know better " that to do anything except prescribe CRAB+T drugs. Felt we have different " disease models " . The CRAB+T drugs say we have a confused immune system. Therefore we need prescription drugs to regulate our immune systems. Disease model #2 says we have a bacteriological - viral infection attacking our central nervous system (CNS). Felt this was like the 1980s stomach ulcer model that said type-A personalities were the cause of our stomachs producing TOO much acid. this disease model required a prescription drug to regulate our stomachs acid production. Along came a couple of Australian researchers that figured out it was bacteria causing stomach ulcers. They got a Nobel prize for their findings. > > > Hi Tim > I reckon you probably know already what MY answer will be!! > > No way would I ever try it and my Neuro offered, but agreed that I'd probably be one of the 'unlucky' ones in regards to PML and death! > He REALLY has been great and is very supportive of my having had the CCSVI procedure and is now helping me get back on my feet again with referring me to a physio. He's also in supportof me getting to a chiropractor too as he agrees that having walked weirdly for so long, would have put me all out of shape. > > > 'What we do in life, echoes through eternity.' > MARCUS AURELIUS (121 - 180 A.D.) > > > > > > To: mscured > > From: janetorchard@... > > Date: Wed, 5 Jan 2011 15:50:29 +0100 > > Subject: RE: Tysabri. Evil? > > > > > > Hi Tim, > > Sorry, no experience with Tysabri, or any other Big Pharma drug. > > My neuro just wanted me to do the same. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2011 Report Share Posted January 5, 2011 I know this is a natural group and I myself am not taking MS drugs, but honestly I have heard a handful of stories of people who felt much better on Tysabari. One was able to go back to work after being on Disability for 5 years. I am aware that risks of death and serious side effects are reported, I am simply stating that the handful of people I personally know who are on Tysabari are very happy with it. That said, I am staying with the holistic and natural methods. ________________________________ To: mscured Sent: Tue, January 4, 2011 8:30:50 PM Subject: Tysabri. Evil? Hi gang. Happy new year! My Nuero wants me to go on Tysabri. I am afraid to do it because the side effects are deadly and the positive effects are a " maybe " . This after he looked at my new MRI and showed me that I have no new lesions after 2 years but the three spinal lesions have swelled somewhat - not very si Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2011 Report Share Posted January 5, 2011 Where's your neuro at? > > My nuero does not like Tysabri. He does not thing the odds justify the means. My nuero is not like a lot of others. He doesnt go with the flow and is very much encouraging the natrual way of doing things. > > I've never been on Tysabri, but have heard way too many bad things about it. > > > > > Quote Link to comment Share on other sites More sharing options...
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