Theratec and Life Care
Question:
"I don’t think the NMSS wants a cure. They have too much to lose if one is found." Hi, Kip. I can agree that there might be some folks who do not want a cure.. (not sure why…but accept it might be) though I’m at a loss to understand why you think a non-profit organization like NMSS, devoted solely to the progress in finding a VIABLE cure for MS would have anything at all to *lose if one were found. They’re not in the profit business. If we’re cured, they lose nothing. They’ll still be in the non-profit business of counselling and providing information to newly Dxed… I just don’t understand your position on this… (No flames here… just an honest discourse! <smile>) Very best, Judith
Response:
Judith, I guess I thought that some employees in the NMSS would fear for their jobs if a cure was found. I think what I really have against the NMSS (at least my local chapter) is personal though. When I was first diagnosed I decided to use the Swank diet as my main treatment not one of the ABC’s.(This was before I had heard of the Mexican clinic or the Illinois clinic.) The local NMSS people knew I chose the Swank diet as treatment although I didn’t put down the ABC’s. I signed up to join a support group. I got no response. I just thought that they had misplaced my name. I asked again. Still no response. I asked a third time. No response. After three times I’ve started to think they didn’t want me because I used only the Swank diet as a treatment. I can’t see any other reason as I’m a nice guy and personable. Best wishes,Kip – Hide quoted text — Show quoted text -Eagle Way2 wrote: > "I don’t think the NMSS wants a cure. They have too much to lose if one is > found." > Hi, Kip. > I can agree that there might be some folks who do not want a cure.. (not sure > why…but accept it might be) though I’m at a loss to understand why you think > a non-profit organization like NMSS, devoted solely to the progress in finding > a VIABLE cure for MS would have anything at all to *lose if one were found. > They’re not in the profit business. If we’re cured, they lose nothing. > They’ll still be in the non-profit business of counselling and providing > information to newly Dxed… I just don’t understand your position on this… > (No flames here… just an honest discourse! <smile>) > Very best, > Judith
Response:
Hi Kip! You wrote:
<< I think what I really have against the NMSS (at least my local chapter) is personal though. >> I don’t think your choice of treatment entered into this situation. I had the same problem with the local NMSS, and I am on Betaseron. The problem was probably inefficiency: a lot of people working there are part-timers, and they also have MS. Finally, I found out when and where they were meeting through the hospital, and I just showed up. Take care! Sylvia
Response:
Kip King wrote The local NMSS people knew I chose the Swank diet as treatment although I didn’t put down the ABC’s. I signed up to join a support group. I got no response. I just thought that they had misplaced my name. I asked again. Still no response. I asked a third time. No response. After three times I’ve started to think they didn’t want me because I used only the Swank diet as a treatment. I can’t see any other reason as I’m a nice guy and personable. Hi Kip, That is so sweet what you wrote. <smiling at you> Of course I don’t know YOUR local MS Society. But I don’t believe that has anything to do with it. I believe it might just take a fourth time for them to get back to you. <smiling at you> Try again! You do the treatment of your choice. Take care, Dawn
Response:
"I asked again. Still no response. I asked a third time. No response. After three times I’ve started to think they didn’t want me because I used only the Swank diet as a treatment. I can’t see any other reason as I’m a nice guy and personable." Kip, Okay, now I can see where you’re doubt is coming from. But, I had the same experience with my only local support group…and they knew *nothing about me. I can ASSURE you that NO one at NMSS, (and certainly not your local support group) cares about the treatment you choose to take. They don’t make judgments about those things… They really don’t have time. It’s just possible that you ran into a strange situation. It happens. But The NMSS would have their hands *really even *fuller, if there was a "cure". First, it would take years to educate different people, and redfine assistance and information. I doubt anyone at the NMSS (many of whom HAVE MS) would make such a judgment. IF they even remembered it! And, it certainly does NOT change the fact that they are working with hundreds of medical professionals to help find a cure for US, and keep us informed! Of COURSE they want to find a cure… Just ask LaVonne about how much time and energy is spent lobbying in Washington, etc… I don’t agree with much of what they say, but they’re are some excellent things in the newsletter, too! I, too, have had some less than perfect responses from the NMSS… But mostly because I lived in such rural areas. I *still feel that the NMSS is "fer us, not agin’ us"! <smile> It’s certainly been acknowledged that some of the "Local" chapters need some new personnel, or policy changes, but one can always contact the Main Office with a legitimate complaint. They DO take action. Remember, they’re are hundreds of PWMS working part time or full time for *minimum wage, to help… to feel useful…and to help out their meager SSDI checks. But ignoring you because of the Swank Diet? My guess would be the answer to that is… No Way! <smile> Best, Judith O Memory, Memory! Wherefore art thou, Memory? —just me
Response:
On Thu, 11 Feb 1999 04:31:56 -0500, "Dawn Jenkins" <da…@sprint.ca> wrote: >Hi Kip and others, >Could someone please correct me if I’m wrong ?????? Wasn’t there a time >several years ago when antibiotics was thought to be the cure for MS????
I had a chat with a neuro about three years ago and he told me that when he first studied MS in depth he had helped a team investigating possible bacterial causes. He also said that antibiotics have been used in the past but nothing positive came of the investigations. The investigation was over thirty years ago so it must be due for a repeat! Steve — Stephen Wolstenholme Neural Network Shareware http://www.tropheus.demon.co.uk
Response:
This is all I know so far. When I find out more, I’ll let the group know. Kip King – Hide quoted text — Show quoted text -darby7…@my-dejanews.com wrote: > In article <36C29DC8.D7685…@home.com>, > Kip King <wodi…@home.com> wrote: > > In spite of what some may think, I don’t advocate Theratec. I and others > > are in touch with three Mexican doctors who are investigating it. I’ll > > let the group know what I find out. Meanwhile, I recently found out > > about another possible cure in Aurora,IL. It’s from a company called > > Life Care Systems. They are more conservative and won’t call it a cure > > until someone is free of MS for 15 years. It uses antibiotics. I’m not > > sure about it too. Joe Farinella who went to Theratec, and who is a part > > of this group, says he’s in touch with a few people who went to Life > > Care and are now planning to go to Theratec. The program at Life Care > > has you go there for an exam and tests which cost about $800. They say > > insurance will probably pay for it. You then go back home with > > instructions for your doctor on what antibiotics to prescribe. You have > > to take the antibiotics for six months to two years. If these possible > > cures don’t pan out, I’ll keep on looking on my own. I don’t think the > > NMSS wants a cure. They have too much to lose if one is found. This > > message is for information only. I’m not endorsing any treatment. > > Best wishes,Kip King > What What do you mean by a "cure" ? If you are RR does it mean that you no > longer get exacerbations? If you are PPMS does mean that you have the myelin > re-grown, or some substitute, and then you walk again? > gcopl…@inet-systems.net > Be > ———–== Posted via Deja News, The Discussion Network ==———- > http://www.dejanews.com/ Search, Read, Discuss, or Start Your Own
Response:
In article <36C29DC8.D7685…@home.com>, Kip King <wodi…@home.com> wrote: – Hide quoted text — Show quoted text -> In spite of what some may think, I don’t advocate Theratec. I and others > are in touch with three Mexican doctors who are investigating it. I’ll > let the group know what I find out. Meanwhile, I recently found out > about another possible cure in Aurora,IL. It’s from a company called > Life Care Systems. They are more conservative and won’t call it a cure > until someone is free of MS for 15 years. It uses antibiotics. I’m not > sure about it too. Joe Farinella who went to Theratec, and who is a part > of this group, says he’s in touch with a few people who went to Life > Care and are now planning to go to Theratec. The program at Life Care > has you go there for an exam and tests which cost about $800. They say > insurance will probably pay for it. You then go back home with > instructions for your doctor on what antibiotics to prescribe. You have > to take the antibiotics for six months to two years. If these possible > cures don’t pan out, I’ll keep on looking on my own. I don’t think the > NMSS wants a cure. They have too much to lose if one is found. This > message is for information only. I’m not endorsing any treatment. > Best wishes,Kip King
What What do you mean by a "cure" ? If you are RR does it mean that you no longer get exacerbations? If you are PPMS does mean that you have the myelin re-grown, or some substitute, and then you walk again? gcopl…@inet-systems.net Be ———–== Posted via Deja News, The Discussion Network ==———- http://www.dejanews.com/ Search, Read, Discuss, or Start Your Own
Response:
In spite of what some may think, I don’t advocate Theratec. I and others are in touch with three Mexican doctors who are investigating it. I’ll let the group know what I find out. Meanwhile, I recently found out about another possible cure in Aurora,IL. It’s from a company called Life Care Systems. They are more conservative and won’t call it a cure until someone is free of MS for 15 years. It uses antibiotics. I’m not sure about it too. Joe Farinella who went to Theratec, and who is a part of this group, says he’s in touch with a few people who went to Life Care and are now planning to go to Theratec. The program at Life Care has you go there for an exam and tests which cost about $800. They say insurance will probably pay for it. You then go back home with instructions for your doctor on what antibiotics to prescribe. You have to take the antibiotics for six months to two years. If these possible cures don’t pan out, I’ll keep on looking on my own. I don’t think the NMSS wants a cure. They have too much to lose if one is found. This message is for information only. I’m not endorsing any treatment. Best wishes,Kip King
Response:
Hi Kip and others, Could someone please correct me if I’m wrong ?????? Wasn’t there a time several years ago when antibiotics was thought to be the cure for MS???? You take a certain kind for a specific time and then WHAMMO you’re cured. Or was I dreaming? This isn’t going to work either. It didn’t work before. So it’s certainly not going to work now. <smiling> Take care, Dawn
Response:
Hi Kip! You wrote:
<< I don’t think the NMSS wants a cure. They have too much to lose if one is found. >> I don’t know where you got this idea! Everyone I have met in the NMSS either has the damn disease or is close to someone who does. Why on earth they wouldn’t want a cure is beyond me. When the vaccine for polio was found, the March of Dimes shifted their energy into treatment and prevention of birth defects. I look forward to the day NMSS can take on another cause, or dismantle itself. Take care! Sylvia
Response:
Filed under: Lobbying
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