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08-16-2015, 05:09 PM | #11 | |||
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Dyskinesia will not settle down without alteration to your wife's medication regime. It is a response to L Dopa medication so if she is taking excess LDopa she will continue to suffer from it. If I remember right the protocol includes a very high dose of mucuna puriens? That is a form of LDopa therapy. Anyone can claim anything on line and I notice these same people flood the Internet with their information so it takes some ferreting to find any criticism or alternative viewpoint on their treatment.
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"Thanks for this!" says: | soccertese (09-12-2015), Thelma (08-17-2015) |
09-12-2015, 03:35 AM | #12 | ||
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11-19-2015, 12:35 AM | #13 | ||
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My sister has been on the protocol (working with Dr. Alvin Stein) since the end of May. At ~ the 2 month mark, things turned on for her. At that same time, she began having dyskinesia-type movements - with repetitive jaw and neck muscle contractions and left lower leg writhing movements - making it difficult for her to eat and walk, respectively. While it has been a journey of ups and downs, my sister has quality of life back. Those dyskinesias have subsided ~ 90% over the last several months. Now she is dealing with being "on" and "off" without any predictability. We continue to work with Dr. Stein and trust that she will find the right balance. Even when she is "off," she is miles better than she was when she started this protocol in May. I hope that by now your wife is doing better. It is a slow process, but should help with time. Blessings to you and your wife, Sue |
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11-19-2015, 09:21 AM | #14 | ||
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11-19-2015, 10:49 AM | #15 | ||
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Thanks, Badboy99. I came to this site through a Google search looking for others using this treatment approach. It is good to see your story and the stories of others here, too. Hope you are doing well and continuing to have good days!
Blessings, Sue |
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09-08-2017, 02:37 PM | #16 | ||
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Maybe people go to non conventional therapies, as aminoacid therapy, (which is not so novel, because it uses Levadopa anyway), because traditional PD treatments give patients no hope. My husband was diagnosed when he was 46, he is now 53, and he stopped Levadopa+carbidopa after taking it for 3,5 years. After a time with no Levadopa, nearly a year, he is now close to start Hinz protocol, we are simply trying to find a doctor here in Spain (or in UK) who can treat him.
I think it is not to difficult to understand that getting a relieve on your simptoms for 5-7 years and after having a life sentence of feeling worse each day, on-off effect, dyskinesia, bradikynesia, or even tachyphylaxis(to which he would get for sure due to his age), plus depression and several more problems is not a bright future. If conventional treatments were solving the problem this forum wouldn's exist, in the same way there is not a forum for people who broke their leg, you get a plaster, your bones patch up and you forget about it because traditional medicine has the perfect solution for it. You constantly speak as if traditional treatments had the solution for the problem, but actually they don't. Whay they offer as a "solution" is really a patch, a blotch, something which will only work for few years. If you are 85 when you are diagnosed PD it may be OK, you don't need to think too much about it, but if you are 46, obviously you don't want to have 7 good years and after 30 terrible years. Therefore following a theraphy which has been developed by a doctor, not by a healer or a quack seems quite reasonable. |
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