I too have tremor dominant PD and have gone med free for 5 years. Then due to worsening tremors tried carbidopa for 4 months for no relief so I quit.... only got nauseated. Thought about the Hinz P but the idea of large amounts of the stuff to take in the beginning with only more and more to take in your future turned me off. Tried Requip (bad stuff) and Cogentin (nope) and Amantadine (ok). Now in the middle of DBS looking for tremor relief.

TRYINGYOURBEST,
just curious, i'm signed up for DBS evaluation and it looks like a very rigorous series of tests in 1 day, especially being non-medicated for 12 hours. would you mind summarizing your testing experience? it seems like besides gathering info necessary to present to an insurance company that you need DBS they also want to make sure you can withstand a day of stress that won't be nearly as bad as what the DBS operation will be like plus see what support you bring with you? Did you wonder about this, cuz it seems like they could easily schedule multiple appts for the URDS(?) unmedicated eval, depression, dementia and final neuo exam. sorry about being so nosy.

Hi,
I answered you on Blackfeather's last post thread. If you don't see it then it may have not been cleared yet.

Hello,

I wanted to chime in on your concerns about the Hinz protocol. My sister is on it and it has been nothing short of miraculous for her. With our experience, she began on very low doses of the supplements. Over months, those amounts have been increased. She is still working with her doctor to fine-tune her dosages (which is definitely an exercise in patience!) but, once that dosage is determined, there should be no need for taking more and more in the future. (This process for her has been over the course of the last 10 months. She went from only walking for short distances, having a constant tremor along with rigidity, and needing help for all activities of daily living to walking with almost a normal gate and being independent for all activities of daily living! Her tremor is mostly gone; when it does appear, it is minor compared to what it was in the beginning.)

The protocol is expensive and does not come without challenges - but it has given my sister her quality of life back.

Wishing you well,
SueC

Can someone provide info on how to start the protocol.
Thanks

Hello RooJr,

From what I understand, there are ~100 health care providers trained in this approach. Many are doing consults remotely, via telephone or Skype. I think the best way to find a physician is to call the company that makes the supplements used in the protocol, CHK Nutrition: 877-538-8388.

I will mention 2 providers: Dr. Alvin Stein in Florida (954-581-8585) and Dr. Chad Oler in Wisconsin (608-274-7044). If you Google those names, you will find more information about Amino Acid Therapy.

Hope this helps!
SueC

Thanks so much for the info!!

Roo - I am working with a functional medicine doctor out of Jacksonville. His name is Dr. Serle. You can work with most functional medicine doctors as well as others that will work with Dr. Alvin Stein or Dr. Hinz. I actually presented this protocol to Dr. Serle who said that it made sense and we gave it a go. I will see my neurologist later this month to actually see what his views are. I can tell you this, most neurologist won't support you with the protocol. In fact, if anyone knows a Neurologist that supports this protocol, please let me know.

Although my symptoms were on the milder side, I couldn't get over how crappy I felt over the last two years since this diagnosis and my treatment of sinemet.... apathy, depression, rigidity and pain. Once I started this protocol, I had a dramatic effect in feeling more connected with life in general. Feeling connected is my biggest achievement since starting, along with an increase in energy and no more depression. I still feel at times some pain and rigidity but nothing near like what I was experiencing. I actually went snowmobiling (mountain riding) last week in Alaska. Twelve hours in airports/airplanes didn't effect me. I tried snowmobiling last year and on the last day, I was physically and emotionally drained to the point I was crying... for no particular reason. I had a hesitation on my right (PD dominant) side and thought I wouldn't be able to ride again but this year, I felt great the whole time, with no hesitation. In fact, typing this long response and I am not double stroking/missing keys!! I have some dexterity back, lots more!!

On day one, you no longer take Sinemet and begin taking mucuna/5-Htp/L-tyrosine/L-cysteine. I do not recommend doing this on your own. You will ultimately have dopamine and serotonin levels tested through urine. Everyone's dose is different. I take 5.4 grams of munuca a day, along with the others. Seems like a lot to me but compared to what others are taking, it's not that much.

Admittedly, I was fearful of stopping Sinemet but the protocol still calls for the gold standard treatment, which is L-dopa but from a different source, munuca pruriens. Most get their amino acids from CHK Nutrition. That is where I get mine. Some on this forum are skeptical that CHK is in it for the $ and that Hinz/Stein are just out to get your $ through CHK. Well, it's either them or pharmaceuticals. I can tell you this for sure, I am glad to not be taking pharma meds any longer and gladly pay a few dollars extra for the way I feel today. Sinemet made me feel like absolute crap. The carbidopa depletes vitamin B6 and l-dopa depletes serotonin. I think I found out why I was so energy deficient and depressed!! This protocol addresses both. Neurologists won't address those issues except to give you prescriptions to combat symptoms that crop up.

A few other things that I have tried that may have helped or seem to be helping:

Cannabis - I have been a big advocate for cannabis for all of the symptoms that I have encountered. It has helped for pain/rigidity/depression/etc. I was micro-dosing with a tincture that I made with both CBD rich and THC strains. The day I switched to this amino acid protocol, was the day I stopped using the tinctures! I just feel that much better!! I still take CBD since it is neuro-protective.

Exercise - I bike 15-20 miles 3-4 times a week. However, I have always been athletic but biking for my main exercise was new.

Food/Detox - Prior to starting this protocol, I did a full detox. I now eat only organic foods. We all have our suspicions on how we developed PD. My best guess is that we are slowly being poisoned through our food and water supply.

Summary - All of the above has likely helped me get better but there was definitely a light switch after stopping sinemet. Oh, by the way, I tried Rytary too just before the switch. I felt so awful for the four days I tried Rytary that that was the final straw to try this 'radical' approach. Now, it doesn't seem so radical. It proved to me that carbidopa was something that my body was telling me to stop!!

That is great for your sis. We must each find our path to QOL!

Hi, How should the protocol be admistered? in 6 mos and 3 urines with nothing
To show for it but pill stops and frustration. It is not easy to tell if the D5 does anything during the day. It has basically become a great sleep aid-that's it. Any tips or insight would be much appreciated.

Thank you,

Arlon Bennett
Diag. 2010