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10-17-2016, 09:47 PM | #21 | ||
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Working (?) with Dr. Enescu in NJ. I have never been on a real pill stop because I have been unwilling to forgo my 11g D5 mucuna at night that gets me to sleep. Without it is complete insomnia, and I cannot function which is to say take care of my kids - especially in the morning. The holy Grail happened when I was on 10 g mucuna/day (with the 15g tyrosine etc) and after I drank A lot of water. Same thing happened a few weeks ago. I get no nausea from Mucuna, though there used to be early on. I get no guidance from this doctor. I have to beg him for the urine reports and it didn't even seem like he used them for dosage adjustments. Also, I do not use pills of mucuna D5 - only powder. Every morning I mix the dosage into 12oz of water as my delivery system and drink two oz every two hours. SO when you do the math on a 12 g per day mix, I intake 2 g every two hours. In this concoction is also the 15 g tyrosine - and I take vitamin B6 (100g 3x/day), the cysrepletes (6 caps/day) and 2 neurorepletes/day. I came across this "juice" idea from Dr. Stein's website. Otherwise I was measuring powder, putting in my mouth and chasing it down with water.. I just did not know better, especially since the D5 mucuna oxidizes easily. Thanks so much for your help and the links! I will check them out. I should not feel so alone in this process, but I do. Looking for another practitioner! I must see this through..
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"Thanks for this!" says: | engsec (10-18-2016) |
10-17-2016, 10:09 PM | #22 | ||
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By the way, I was at 13.5 g mucuna / day level most recently what I felt crappy (Poor balance and gait) And he ordered a pill stop. Keep in mind that the 13.5 g does not include the 11g i take at night to sleep.. right now I am taking NO D5 mucuna or tyrosine and only feel slightly worse (maybe!). Uh-oh here comes my 11pm RLS! Thankfully the D5 mucuna takes care of that too. It's more that than insomnia..sheeesh! And how are you billybobby21?
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"Thanks for this!" says: | engsec (10-18-2016) |
10-18-2016, 02:20 AM | #23 | ||
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Hi billbobby21 ,
Yes, you are right and I am agree with all and I am happy you are here . coz it seems that you read all of papers by dr. hinz . I did too . and sorry about my suggestion for "Tryguy" . I misunderstand and though he feeling sleepy . but the concept of my reply are tested by me on my father . The story of the idea of measuring BP , instead of OCT2 test (for me that have not access to DBS lab) was started about 6 months ago when I wrote an email to Dr. Alvin Stein and told him about this idea . He wrote me back, that my idea is correct on the paper but I will face some problems : 1- the purity of powders (Mucuna,5HTP,Tyrosine) 2- The BP measuring idea is not stand up statistically Finally after 3 or 4 months working of this idea on my father by try and error , I decided to calculate the level of the products of each amino acid (dopamine, serotonin) per hour for my father . I make a catecholamine level calculator by Microsoft excel and tested the results by checking blood pressure of my father per hour . after 26 times changing of formulas finally I think that this calculator is showing correct levels and I could predict my father symptoms in next hours ! for example if I see when he is ON , then I will try to re arrange amino dosages to have more ON times in my calculator . the success which I reach in past 30~40 days : - full night sleep - normal blood pressure before staring next dose. (his BP was mostly 7/4 at this time , now is 9/6 ~ 10/7) - his appetite is back after 3 years The problems : - He have light dyskinesia and the top level of dopamine , I am trying to fix it by 5-HTP (he is on 1200 mg b6 about 3 months and I am waiting yet for results) and ..... the topic name is actual experiences , so its mine . Best wishes |
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"Thanks for this!" says: | Tryguy (10-18-2016) |
10-18-2016, 05:31 AM | #24 | ||
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With the pill stops, I am sorry to say that a big factor for why this hasn't worked for you is likely your unwillingness to do a real pill stop where you do not take any Mucuna at all for 2 days. When you say you were on the 10 g of Mucuna and had the period of symptomatic relief, were you only on 10 g or is this not including the 11 g before bed? Unfortunately if you want to have success with doing this, you will really need to commit to doing the complete pill stops for 2 days. If you are unwilling to do this, I understand, but you very likely will not find success with this treatment method. The way I think of it is this: Those 2 days where maybe you can't sleep will definitely suck, BUT you have to think about why you are doing it. In the short term it might suck but to get yourself through it just think about the long term benefit. A few months of having a few nights a week of little sleep I would think is worth the long term prospect of symptomatic elimination and stabilization. Also with this protocol if you get fully stabilized it can halt any further progression or greatly reduce it. So this will just be something you have to decide for yourself I guess! A thought I just had is in the short term, if you really can not sleep while not taking any Mucuna, it could be beneficial to take a mild sleep medication for help on the nights of the pill stop. I am almost entirely against sleep medications, but in your case you would only be using it short term once or twice a week if the insomnia is really severe and only for a few months until you are stabilized. It might be worth looking into. |
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10-18-2016, 10:31 AM | #25 | ||
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What you say about my unwillingness to do complete pill stops may be true, but I did mention this to the doctor and we moved along like it was nothing. I would bite the bullet however if he said it was necessary to move forward. It has been a frustrating six months. I had hoped to be "there" by now.. BUT something drives me with this and I am not ready to give up yet. I have checked out Chad's videos, but I made a consult with Dr. Dan Kalish for next week. These guys may be not be neurologists but it seems they have miles of experience (Also P.A. David Overton in WA). Then of course there is Dr. Hinz...;-) If I may ask how has the process been for you? Have you gotten "there" yet? Gradual or light switch? Thanks again for being such a big help! Do you know of any other forums that discuss Hinz et al?
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10-18-2016, 10:37 AM | #26 | ||
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Thanks too to Engsec! I appreciate you sharing your experience. I can only hope my kids take of me like you have taken care of your father.
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"Thanks for this!" says: | engsec (10-18-2016) |
10-18-2016, 11:20 AM | #27 | ||
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Quote:
With my personal case, I do not have Parkinsons disease rather different symptoms resulting from multiple concussions a few years ago. The main symptoms being cognitive/thinking issues/brain fog, depression, extreme fatigue, OCD, Tinnitus, and headaches. The research on the monamine system done by Dr. Hinz indicates that treatment of all of these diseases (full list found here: http://new.neurosciencemyths.com/wp-...lticolored.jpg) is caused by the same dysfunction, thus the same form of restoration of electrical flow byway of providing adequate serotonin and dopamine precursors aka 5-htp, L-Tyrosine, and L-dopa along with a Sulfur amino acid like L-Cysteine will relieve all of these symptoms of disease. For each patient depending on the area and amount of the brain damaged or the amount of depletion of neurotransmitters or genetic anomaly will be the deciding factor as to the amounts of pre-cursors needed to alleviate symptoms. So with my case, within the first month of starting the protocol I was on the dosage of 8 NR, 6 Cys, and 2 D5 Mucuna. On this dosage I had a vast improvement in symptoms. I would say I was 70% better. I stayed on this dosage for a month as I was dumbfounded by the fact that my symptoms had improved so much as I thought I was never going to get better. Over time the beneficial effects of the dosage slowly started to fade away until I was only a little better from when I started. It has been quite a long road from then until where I am now, going on 2 years now, and the reason being that my case is not of that which is typically seen. Most patients who are not Parkinsons or RLS fall into two categories. Either Three Phase or Dopamine Dominant. Over 90% are three phase which basically means the Three phase response that is observed by doing lab tests is how dosage determination is made. These patients typically need small amounts of dopamine precursors and medium to higher amounts of serotonin. I've expanded on this more in previous posts. Around 8-9% are dopamine dominant patients where the treatment method is basically the same as Parkinsons patients, but typically these patients do not need nearly as much L-dopa to control symptoms. There is a 3rd kind of patient known as Straddle or Mixed Dominant that is very rare, these patients need large amounts of both L-dopa and 5-htp, less than one percent of patients fall into this category. Unfortunately for me, I am one of them. There is not much data on Mixed Dominant patients, as well as me not being identified as one until 6 months ago, so it has been a hard journey so far. After that period where I had 70% relief of symptoms for a month, I instantly started researching all of this stuff immensely as I was blown away by the fact that it was able to improve my condition so much. After the beneficial effects went away, I started working with Dr. Stein, because I knew based on the fact that I got quite a bit better and based on what I read that this was legit, and we did a dopamine challenge. The dopamine challenge is basically a test where you give someone 6 D5 Mucuna pills and if they do not have negative effects from it like terrible brain fog, memory problems, etc. then they are deemed to be dopamine dominant. Looking back now it makes sense because I do need higher amounts of L-dopa BUT I also need high amounts of 5-htp. So for quite a few months I was only taking large amounts of L-dopa as we increased the values and did pill stops. Honestly my entire experience on this protocol so far would take a few pages to fully write out and explain and I don't want to bore you so I will just leave it at that. Coming back to your personal situation, I believe that if you go back down to 7.2 g of Mucuna a day which is equivalent to 24 pills, do a pill stop for 2 days, see if there is symptomatic relief at any moment during the pill stop, if not then increase to 9 g, repeat process, increase to 10.8 g, repeat process, etc. Until you do a pill stop on a dosage and get a period of symptomatic relief which would identify the dosage range needed to fine tune on. Also, you did not answer my question earlier about if on the 'holy grail' period were you only on 10 g of Mucuna a day or were you taking 10 g plus the 11 g at bedtime so 21 g in total? |
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"Thanks for this!" says: | engsec (10-19-2016) |
10-19-2016, 12:31 AM | #28 | ||
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Junior Member
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I thank you Tryguy and billbobby21 so much , we all are in a boat. anyway , if you want , I could enter your amino acids in my calculator and tell you what will happened to you during the day and night by a diagram . I should mention that this calculator is not made just for a specific patient . the formulas are research based, not my father based . I only checked the accuracy of the calculation by my father and the only value may differ from a patient to other one is the percent of conversation of dopamine from l-tyrosine.
Info which I need , is amount and time of your amino acids . I need exact time of intake of them all. and I need to know the exact best and worst time of the day of you. after calculation I could tell you dopamine and serotonin level of you during the day/night . |
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10-19-2016, 05:19 PM | #29 | ||
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Hey BillBobby21, just got the two day orders from the doctor on the pill stop. Going to give it a shot tonight and tomorrow which is my birthday… Yeehaw! To answer your question it was the 10 g plus the 11 g at night totaling 21 g for the day. I hate to try the cold medicine for sleep but may have to…
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10-19-2016, 05:58 PM | #30 | ||
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"Thanks for this!" says: | Tryguy (10-20-2016) |
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