Parkinson's Disease Tulip


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Old 04-05-2017, 11:51 PM #111
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HangOn,

Sorry for the late response, I forgot about this thread but thankfully I remembered it when visiting this site today!

How have things gone with your husband over the last few months? From your last post it sounds like things were going relatively well. When you say he was taking 150 mg 5-HtP, 300 mg of L-dopa, and 1500 mg of L-Tyrosine, do you actually mean he was taking 4 Capsules of NeuroReplete (for the 5-htp), 2 pills of D5 Mucuna a day (for the L-dopa), and a couple pills of TyrosineReplete (for the Tyrosine)? I just am kind of confused as to why you listed what he is taking in that way.


Also did you mention the issues that your husband was having while taking the CysReplete to Dr. Chad? If so, were you able to successfully switch to a Methionine based supplement?

I'd be interested in knowing the specific number values of the tests that he has done as that would indicate the phases and the response he is having, but if you want to keep that information to yourself that is completely understandable.

In regards to your own situation with the RLS, if you are found to actually be dopamine dominant which is done by doing a dopamine challenge. During a dopamine challenge you take 6 D5 Mucuna pills a day for 7 days and see what response you have to it. If you have negative side effects appear, then you would be recognized as not being dopamine dominant and would do the same method of treatment as your husband which is doing tests under the three phase model of treatment. If you tolerate the 6 D5 Mucuna pills with basically no change in how you feel, then you are diagnosed as being dopamine dominant meaning you need high amounts of L-dopa with relatively low amounts of 5-htp for alleviation of symptoms.

The dopamine dominant way of treatment can be quicker/easier or it can be quite a bit more difficult/complicated. It really comes down to how much D5 Mucuna you would need and if any side effects appeared that would need taking care of by adjusting the 5-htp dosing.

I would just make sure to talk through everything with Dr. Chad and then based on what he says and suggests you can make the best decision for yourself. If you have true RLS and not a misdiagnosed condition then doing the amino acid therapy could be of great benefit to prevent any future progression and eliminate any current symptoms.
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Old 04-16-2017, 11:06 PM #112
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Default Lab and supplements

Dr Oler is trying to first increase 5HTP and then if that doesn't work he wants to try a dopamine challenge. My husband, who has a strong stomach, just couldn't handle the nausea from the higher dose of 5HTP and had to back down, so he will be contacting Dr. Oler for the next step.

His lab readings before the following recommendations were:
Serotonin 3428
Dopamine 1489
No phases mentioned but both readings are high according to their chart:
Serotonin 0-921
Dopamine 0-670
For his age range of above 50.


Breakfast: Neuroreplete 4, Replete Extra 1-2, D5-40 2
Lunch: Neuroreplete 4, Replete Extra 1-2, D5-40 2
Dinner: Replete Extra 2-4, D5-40 1

Daily: P5P 100 mg, Methionine 4500mg

Notes:

RepleteExtra & Tyrosine capsules – begin by increasing RepleteExtra to 1/1/2 capsules/day and take 4000 mg tyrosine/day and
continue for 10-14 days; if you are still experiencing symptoms, please increase RepleteExtra to 2/2/4 capsules/day and increase tyrosine to 5000 mg/day and continue for 14 days; if you are still experiencing symptoms complete a DBS test and send in (equivalent dosing = Neuroplete – 8, RepleteExtra- 8, D5 Mucuna 40% capsules = 5, CR = 6, B6 = 100 mg)

Equivalent dosing: increase to 5-HTP = 600 mg, L-tyrosine = 4000 mg, L-dopa = 600 mg, methionine = 4500 mg – continue for 10- 14 days; if still experiencing symptoms, please increase to 5-HTP = 900 mg, L-tyrosine = 5000 mg, L-dopa = 600 mg, methionine – 4500 mg – continue for 14 days; if still experiencing symptoms, submit another DBS test and send in (see equivalents above)

• For all dosing levels, take 400 mcg selenium, 800 mcg folate/5-MTHF, 100 mg B6, calcium – 220 mg, l-lysine: 500 mg.

It is very important to get in all the amino acid supplements daily; if you miss a dose, take them at some other time during the day

You can open the NeuroReplete or RepleteExtra capsules and pour into liquid/applesauce if needed; do NOT open the CysReplete

Leave amino acid capsules in your mouth with water 5-10 seconds before swallowing

Water – drink 2-2.5 quarts of water/tea daily in divided doses (4 oz. (1/2 cup) every 30 minutes optimal)

Thanks!


Quote:
Originally Posted by billbobby21 View Post
HangOn,

Sorry for the late response, I forgot about this thread but thankfully I remembered it when visiting this site today!

How have things gone with your husband over the last few months? From your last post it sounds like things were going relatively well. When you say he was taking 150 mg 5-HtP, 300 mg of L-dopa, and 1500 mg of L-Tyrosine, do you actually mean he was taking 4 Capsules of NeuroReplete (for the 5-htp), 2 pills of D5 Mucuna a day (for the L-dopa), and a couple pills of TyrosineReplete (for the Tyrosine)? I just am kind of confused as to why you listed what he is taking in that way.


Also did you mention the issues that your husband was having while taking the CysReplete to Dr. Chad? If so, were you able to successfully switch to a Methionine based supplement?

I'd be interested in knowing the specific number values of the tests that he has done as that would indicate the phases and the response he is having, but if you want to keep that information to yourself that is completely understandable.

In regards to your own situation with the RLS, if you are found to actually be dopamine dominant which is done by doing a dopamine challenge. During a dopamine challenge you take 6 D5 Mucuna pills a day for 7 days and see what response you have to it. If you have negative side effects appear, then you would be recognized as not being dopamine dominant and would do the same method of treatment as your husband which is doing tests under the three phase model of treatment. If you tolerate the 6 D5 Mucuna pills with basically no change in how you feel, then you are diagnosed as being dopamine dominant meaning you need high amounts of L-dopa with relatively low amounts of 5-htp for alleviation of symptoms.

The dopamine dominant way of treatment can be quicker/easier or it can be quite a bit more difficult/complicated. It really comes down to how much D5 Mucuna you would need and if any side effects appeared that would need taking care of by adjusting the 5-htp dosing.

I would just make sure to talk through everything with Dr. Chad and then based on what he says and suggests you can make the best decision for yourself. If you have true RLS and not a misdiagnosed condition then doing the amino acid therapy could be of great benefit to prevent any future progression and eliminate any current symptoms.
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Old 05-15-2017, 03:06 PM #113
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I would ignore the reference ranges that are stated on the test results as they are outdated.

What really matters is the phases of both serotonin and dopamine, which can be discovered by doing 2 tests on different dosages and seeing how they respond to that change.

If you post all the test results that he has done in order with the exact dosage he was on for each test I could tell you the phase each of them are in, and why Dr. Chad is changing the dosage in the way he is.

So for example it would look like this. First test - Dosage: 8 NR, 8 RE, 2 D5 Mucuna, 8 Tyrosine pills. Serotonin: 400 Dopamine: 200

Also, a VERY important thing that needs to be made sure is being done correctly, is the time that he is taking the test in correlation to when he goes to sleep. Does your husband go to sleep at a consistent time each night? For instance, if he consistently falls asleep around 11 pm, then he should be doing the test at 5 pm. If he falls asleep at 1 am, then he should be doing the test at 7 pm. The dosages throughout the day need to line up with these timings as well. For instance, if he takes the pills in 4 divided dosages throughout the day, then if he fell asleep at 11 pm, he would take the dosages at 9 am, 1 pm, 5 pm, and 8 or 9 pm. He should be taking the dosages within 30 min or so of these times each day, and on the day of the test it needs to be almost exactly at the right times for the first 2 dosages of the day. Also on the day of the test you need to make sure he does the test before taking the 3rd dosage, not after. This is all stated on the test instructions sheet you should receive from Dr. Chad, but I just want to make sure you are following these guidelines as not following them will make the tests erratic and worthless.

Him having a difficult time with the higher dosing values of 5-htp could actually be a sign that he is dopamine dominant, thus necessitating a dopamine challenge. It could just be an indication that the dosing values need to be increased slowly to allow them to buildup to adequate levels linearly rather than abruptly, as some patients struggle with that. My guess is he will do a dopamine challenge soon given he can already handle 5 D5 mucuna pills.
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Old 06-25-2017, 05:31 PM #114
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Default Lab Results and Dopamine Challenge

Initial lab 11/16: 4 NR, 3 D5, 6 Tyrosine. Serotonin 1, Dopamine 1391
Lab 2/17: 8 NR, 2 RE, 5 D5, 3 Tyrosine. Serotonin 3428, Dopamine 1489
Lab 5/17: 2 NR, 12 D5. Serotonin 23, Dopamine critical high

He has him on a dopamine challenge just like you mentioned. The 5HTP increase made him very nauseous and as the dopamine finally got high enough it's made him nauseous as well, but not as bad as the 5 HTP and he is working out his dosage right now for feeling optimal.

After a dopamine challenge what else do they do? Do they just stabilize you on a dose and let it sit for a number of months?

Thanks!

Quote:
Originally Posted by billbobby21 View Post
I would ignore the reference ranges that are stated on the test results as they are outdated.

What really matters is the phases of both serotonin and dopamine, which can be discovered by doing 2 tests on different dosages and seeing how they respond to that change.

If you post all the test results that he has done in order with the exact dosage he was on for each test I could tell you the phase each of them are in, and why Dr. Chad is changing the dosage in the way he is.

So for example it would look like this. First test - Dosage: 8 NR, 8 RE, 2 D5 Mucuna, 8 Tyrosine pills. Serotonin: 400 Dopamine: 200

Also, a VERY important thing that needs to be made sure is being done correctly, is the time that he is taking the test in correlation to when he goes to sleep. Does your husband go to sleep at a consistent time each night? For instance, if he consistently falls asleep around 11 pm, then he should be doing the test at 5 pm. If he falls asleep at 1 am, then he should be doing the test at 7 pm. The dosages throughout the day need to line up with these timings as well. For instance, if he takes the pills in 4 divided dosages throughout the day, then if he fell asleep at 11 pm, he would take the dosages at 9 am, 1 pm, 5 pm, and 8 or 9 pm. He should be taking the dosages within 30 min or so of these times each day, and on the day of the test it needs to be almost exactly at the right times for the first 2 dosages of the day. Also on the day of the test you need to make sure he does the test before taking the 3rd dosage, not after. This is all stated on the test instructions sheet you should receive from Dr. Chad, but I just want to make sure you are following these guidelines as not following them will make the tests erratic and worthless.

Him having a difficult time with the higher dosing values of 5-htp could actually be a sign that he is dopamine dominant, thus necessitating a dopamine challenge. It could just be an indication that the dosing values need to be increased slowly to allow them to buildup to adequate levels linearly rather than abruptly, as some patients struggle with that. My guess is he will do a dopamine challenge soon given he can already handle 5 D5 mucuna pills.
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Old 06-25-2017, 05:57 PM #115
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The lab results are erratic and indecipherable for use in determining the phases. That is likely why Dr. Oler has moved forward with doing a dopamine challenge to confirm if he is dopamine dominant. Given the only negative side effect he has experienced from the dopamine challenge is nausea, he will now likely stay at the dosage the nausea is being experienced at. What will likely be done is he will change the NR dosage from 2, 1, 3, 4, to 8 to try to eliminate the nausea through changes in the 5-HTP dosing. Make sure your husband understands that he should NOT tolerate any nausea. Nausea is a significant clinical finding indicating an improper balance of 5-htp/L-dopa intake.

I made the mistake of pushing through some of the nausea to try to expedite the process and suffered greatly from doing so. If one of the those doses of NR doesn't work then there is the possibility of adding RE for additional 5-htp in the event he needs higher amounts for elimination of the side effect. Also, depending on the dopamine value that was seen on the "Critical High" report, he could be having dopamine fluctuations which would necessitate the addition of Tyrosine supplementation and supplemental testing to pinpoint the amount needed for absolution of it.

Hopefully the side effect of nausea will be eliminated quickly for your husband as he would likely be better quickly after doing so. Just make sure he understands to not increase the D5 mucuna dosing at all until it is eliminated and to be honest to Dr. Oler if it is present.

Once the nausea and fluctuations are resolved, he will then start increasing the D5 Mucuna dosing by 6 or 8 pill increments, stay on the dosage for 5-7 days, and then do a 2 day pill stop. The pill stop is needed to ensure the optimal dosing value is not jumped over in the dosage change.

Is your husband following all the test instructions to ensure the test results are accurate? He should be taking the pills at a consistent time each day in 4 or so hour increments. So for myself, I wake up at 10 am and take my first dosage at 12 pm, 2nd at 4 pm, 3rd at 8 pm, and 4th at 11 pm, then fall asleep at around 2 am. Whenever I do tests I take it at 8 pm before taking the 3rd dosage.
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Old 06-25-2017, 06:10 PM #116
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Default Continuing treatment

Thank you. I passed it on to my husband and we'll keep posting here as to what the doctor has him do next. He has been very faithful to the dosage timing and is a clockwork schedule guy for work and sleep. He had to stop the 5 HTP before they reached max as the nausea was too much and they moved on to the dopamine challenge. Thanks for the information about the nausea, we didn't know how important that can be, He has been open about it with the doctor but because he can withstand a lot, he probably hangs in there longer then he should.
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Old 06-25-2017, 06:22 PM #117
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What time does he fall asleep and what time has he been doing the tests at?
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Old 06-28-2017, 11:21 AM #118
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Quote:
Originally Posted by billbobby21 View Post
What time does he fall asleep and what time has he been doing the tests at?
Dr Chad has him on dosages spaced at three times a day, mealtimes, so his schedule is as follows:

Up at 5:30, 1st supps at 6:00, next at 12 noon, tests at 4:30, and last dosage at 6:30pm, bed at 9:30.

He is to take 1 NR just at B and D and then spread the D5 between the three mealtimes. I believe he is due for another test soon with the dopamine challenge results.

He's used to the routine, doesn't find it difficult to follow, likes the results so far, but is hoping it will increase some more. Any thoughts?
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Old 07-05-2017, 11:34 AM #119
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Quote:
Originally Posted by HangOn View Post
Dr Chad has him on dosages spaced at three times a day, mealtimes, so his schedule is as follows:

Up at 5:30, 1st supps at 6:00, next at 12 noon, tests at 4:30, and last dosage at 6:30pm, bed at 9:30.

He is to take 1 NR just at B and D and then spread the D5 between the three mealtimes. I believe he is due for another test soon with the dopamine challenge results.

He's used to the routine, doesn't find it difficult to follow, likes the results so far, but is hoping it will increase some more. Any thoughts?
That schedule looks pretty good to me.

Now since he has been having nausea while on 12 D5 Mucuna pills a day, Dr. Oler will start changing the NR dosage to try to eliminate the nausea side effect. He will go through the dosing values of 2-1-3-4-8 of NR, and it is likely that one of those dosages will alleviate the nausea. If they don't then he will go through 5-6-7 of NR, then start adding in RE if the nausea is still present after all those dosages. You basically have to try to figure out what the needed amount of 5-htp is for side effect alleviation.

If the dopamine value that was seen on the test where he was on 12 D5 pills a day was over 40,000, then he will also start adding in Tyrosine powder in 1 TBSP increments to eliminate dopamine fluctuations resulting from melanin steal. Getting the fluctuations taken care of will actually be done before adjusting the NR dosing if they are present. You can ask Dr. Oler if they are present in your next consult, as the test results they give to patients only say critical high which means over 20k but not necessarily over 40k.

After you get the fluctuations taken care of, if they are present, and the side effects taken care of, by adjusting the 5-htp dosing, he will then start increasing the D5 Mucuna dosing by 6 or 8 pill cycles every 7 days, then do a pill stop after each dosing. He is currently at 12 pills a day, so he would increase to 18 pills for 7 days, then do a pill stop, where you quit taking all the D5 pills for 2-3 days which decreases the amount in the body to values representing intake between the 12-18 pills that was jumped over. This ensures the needed dosing value isn't missed as intake of too little or too much L-dopa will result in the same symptoms.

Once the side effects and possibly fluctuations are taken care of, it should be a relatively quick process. Finding the optimal D5 dosing usually only takes 1-3 months, depending on how much the individual needs.
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Old 09-08-2017, 06:53 AM #120
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Originally Posted by soccertese View Post
doesn't this MD have patients you can talk to that are successfully benefitting from the hinz treatment? if you can't meet and talk to other pd'ers getting relief from this treatment that would be a red flag to me. the hinz protocol isn't cheap, the few users on this board recently complained about price increases if i remember correctly.

there are lots of treatment options between only carbidopa/levodopa and a very expensive, non-independently verified amino acid treatment. how much C/L is he presently taking and what else has he tried? i can't imagine any neurologist just trying C/L when someone is immobile.
Actually NO doctor provides information about his patients to other pations, not in Hinz's protocol or traditional drugs. Can you imagine going for a heart surgery and asking your doctor to give you the personal details of other patients????

There are NOT alot of treatments abesides Levadopa+carbidopa, actually this is the point, PwP are giving a "sentence" of having enormours problems after 5 to 10 years with Levadopa+carbidopa. That is why Hinz started his investigations.

The fact that the protocol isn't cheap is because most insurances don't cover it, actuall Azilect costs about 280$ per month and nobody complains about it, because insurances do cover it. we've got to a point in which we only believe in what has been aproved by a laboratory, but medicine didn't start 100 years ago, but centuries ago, there is a knowledge in ayudrvedic medicine, for example, which has been treating PD with mucuna for centuries. Actually most medicines are either made with plants or replicate the chemical structure of certain natural products.

The best verification for the treatment is 1200 people who have not had diskinesias and have not experienced how their drugs were not effective anymore.
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