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04-30-2015, 01:08 PM | #11 | ||
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That's great, BreezyRacer. I too can report some improvement from vitamin b9 in the methylfolate form, though I am only taking 1 gram daily. I think I might at least double the amount. My energy level has improved significantly since taking it. Also my legs were losing strenght and feeling rubbery, and that symptom has improved dramatically. Hope others who are trying methyfolate are seeing results as well.
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05-07-2015, 09:53 AM | #12 | ||
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Can you tell me what dosage you are taking? Anyone else have a tremor improvement?
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05-07-2015, 01:31 PM | #13 | ||
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I tried 4 and it didn't seem to make much difference for me. I am using Life Extension optimized folate, which is L-Methylfolate (that's important) |
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05-07-2015, 05:31 PM | #14 | ||
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05-07-2015, 06:30 PM | #15 | ||
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I guess compared to the FDA requirements (what do they know about vitamins anyway?) it looks high. Just watch your B12 levels if you're worried. At 5 mg it starts to affect B12 levels. |
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05-08-2015, 09:57 AM | #16 | |||
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Wisest Elder Ever
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One really should have B12 levels measured when using anything above 800mcg a day of folate.
High dose folate can mask a B12 deficiency leading to nerve damage. The RX form called Deplin is 7.5mg per tablet. It was approved for use in that high dose for treating some forms of clinical depression. People reacting with energy to methylfolate should ideally get the DNA test for MTHFR mutations. This is being found today to be more common than previously thought.
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"Thanks for this!" says: | wxxu (05-08-2015) |
05-08-2015, 10:12 AM | #17 | ||
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Magnate
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" i would like to point out you have no official pd diagnosis, i think it's only fair to point this out when you state you have it. i apologize if you have received a diagnosis. |
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05-08-2015, 01:22 PM | #18 | ||
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I am "just" self diagnosing. I cannot find a good reason to go get a label put upon me at a time when it will do me no good. I know from your previous responses to my posts that you think I am a "faker" .. or whatever. Yes, I guess we would all love to have PD, right? The fact is that a diagnosis of PD is highly subjective, given that PD seems to be a wide range of symptoms. Just for the record, I do not relish having PD in the least. There aren't any single neurological diagnosis' that fit exactly, and thus it seems you are pushed into a diagnosis of PD. Symptoms I DO have .. I have restless legs (diagnosed), more than decade long tremor (much worse when under stress), more than decade long urinary incontinence (even though my prostate is quite small according to the doc), lost my ability to smell, difficulty focusing my eyes, declining balance, ED, and some recent years of depression. I stuttered as a child as well. I have NOT had nightmares, dementia, shuffling gait, nor constipation. Though I've had a mild tremor for over a decade it could be incidental, or at least I thought so till I found my left hand shaking uncontrollably about 1-2" while in my lap a week or so while under stress. I think I'm early in the process and as I stated above I'm gonna do everything I can to address it early. What's a doc gonna do for me at this stage, and I have zero desire to be involved in any "clinical trials". It's entirely possible that I have a B vitamin absorption dysfunction, especially given the way I've reacted to B2, B1, and now folate in high doses. Great if that's the case though as per some studies referenced elsewhere, ALL of the PD patients in that study were found to be B deficient. So is that a flag for PD? Who knows? Neuros don't even test for that stuff. Sadly docs, in general, don't know nor care about vitamins as any form of treatment. I've been down that road before. I'm focusing on dealing with my symptoms and hope that doing so will keep me far away from canes, walkers, wheelchairs, and rest homes. I'm fighting whatever I have with all the knowledge in information I can find. I will not be standing by awaiting a "miracle cure" from some drug company that is working to create some unnatural molecule that the can patent. I don't expect that to go anywhere. So you tell me .. what good is a diagnosis? How is that gonna help? I can tell you for sure it'll freak out everyone I know and love. I don't need to put them thru that. BTW, I've read every study I can get my hands on, out of all I've read I've bookmarked over 260 pages that I think matter to me. I have also organized them by subject or possible treatment. I've studied the hell out of this PD thing. I will continue to do so. I have added a sig line to make sure that everyone knows .. "I'm undiagnosed".
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diagnosed with dystonia. 10 mg seligline |
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"Thanks for this!" says: | Muireann (05-09-2015) |
05-08-2015, 01:43 PM | #19 | ||
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Magnate
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1. it can help you in getting SSDI eventually by setting a start date. 2. you can get into clinical trials for treatments or just providing blood and/or DNA for biomarker studies. 3. you can get RX's for pd meds, physical therapy, etc. 4. a "cure" has worked in the past, fetal cell transplants, but were discontinued due to some patients having very bad results. they are being tried again. 5. not sure what is unnatural about l-dopa, gdnf, bdnf. mao-b inhibitors are found in all sorts of herbs. 6. you don't have to tell anyone you have pd if you pay privately to see a MDS but i sure would want to know so i could plan my life out accordingly, when i got diagnosed i was right in the middle of planning a career change which would have been a risk, decided not to do that. i'll drop this, i'm sure nothing i post will influence you. Last edited by soccertese; 05-08-2015 at 02:17 PM. Reason: REMOVED DUP WORDS |
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