Great Jeff, stick to it and don't give up too easy.

Bravo Jeff !!!
I hope you get positive results !!
kind regards

CTjeff,

Welcome to the forum.

I'm not a doctor, so take this post as you will.

If I understand your post correctly:
- your father went 5 years without levodopa. Was he on some other medication?
- your father went 3 years with levodopa, with no sign of Parkinson's symptoms. What dose was he on?
- over 2 years he has become immobile. Did your father's doctor try increasing his dose of levodopa during this time?

Some deterioration with time is to be expected, but I'm surprised by the large change in the rate of progression.

In my opinion, this suggests that your father had slowly progressing PD for the first 8 years and has had a much faster progressing "something" for the last 2 years. Has vascular PD and depression been discounted?

Have you discussed this with your father's doctor? It could be something other than IPD.

John

Jeff said in his original post.

"He has been on Carbidopa/levodopa for 5+ years"

"within the last 2 years his symptoms started to become visible and within the last year, he has become almost fully immobile"

regardless, i like john think it' s odd that this poster can only say his father is immobile and he wants to go from C/L to a very expensive, unproven treatment. that seems somewhat unfair to his father. there are other options. so maybe he is leaving out some details.

Hi all ,
My father is 75 years old and have PD for about 17 years , he was using Madopar and paramapixol (Sifrol) always . About 2 years ago he stop walking , talking , eating ....
and he is in bed from that time , he had very bad condition , his last dosing was : Madopar 200/50 x 6 times a day + 3x.36 mg paramapixol . some months ago I read about amino therapy and grab whole of things needed to start the process , I read almost whole papers created by Dr. Hinz and Dr. Alvin Stein .
I am not in USA , so I forced to do all things by myself . I bought L-dopa (mucuna) , tyrosine , cysteine , b6 , folate , selenium and other cofactors from online shops and start the job .
I cant offer test from DBS lab , so I am monitoring him every hours and decide to what to do.
his current dosage of amino acids are :
L-dopa (99% mucuna - source from usa) = 18.6 Gram per day
L-tyrosine = 12 gram per day
L-cysteine= 4.5 gram per day
5-Htp = 100 mg per day
B6= 300 mg per day
I did a pill stop some days ago and it shows that my father need higher dosage of L-dopa .
His main symptoms are = confusion - agitation - delusions and sleep disorders
I don't know when he will reach to balanced dose. I should mention that his overall condition and symptoms are very better from before starting aminos.
I would like to hear if anyone else here is using higher that this dose of L-dopa .
Best Wishes
Babak

Get in contact with Dr. Stein. I believe he works with patients who are not in the usa. You will not be able to successfully treat your father without doing lab tests to control dopamine fluctuations with tyrosine. Also, you need to be certain the substances you are using are actually what they claim to be. The supplement industry is laden with false labeling which means the tyrosine or 5-htp you are buying may not actually be 100% what they say it is which will make it impossible to treat him correctly.

Dr Steins offices phone # - 954-581-8585 or email him at nobones@aol.com

If you decide to call, do it during the week. They are not open on the weekend.

I repeat do NOT do this on your own. You NEED the lab tests as well as the experience of a trained physician in this approach to be able to do it successfully. Get in contact with Dr. Stein, he does consultations over the phone so you should be able to do it.

I know all this because I am a patient of Dr. Steins for the treatment of TBI related issues.

Hi billboby21 ,
Thx for your idea , i just sent an email to Dr. Stein . Will be wait for him . Anyway i would like to know the Amino dosage of a patient with an over 15 yrs history of PD. Just for compare . Coz all of cases in this forum have a history of PD below 15 yrs. i am know that the dosage will differ for every case , just for compare.

The highest dosage of L-dopa needed was 21,000 mg(or 52,500 mg of mucuna standardized to 40% L-dopa) as stated in this paper - https://neurosupport.files.wordpress...tted-paper.pdf

With your father he could be anywhere throughout the range of 240 mg to 21,000. As you stated it is specific to each individual and the amount of damage that has occurred in the brain. The more damage the more that is needed. Given the fact that your father has severe parkinsons symptoms, he will likely need quite a bit of L-dopa to be able to control it. But you also need to balance it against 5-htp and L-Tyrosine for it to work effectively and control side effects.

Here is a case study of a parkinsons patient treated by Dr. Hinz - https://neurosupport.files.wordpress...-parkinson.pdf

Dr. Stein usually responds pretty quickly to emails so you should get a response soon. If for whatever reason you dont get a email back over the next few days, let me know and I will get in contact with him on your behalf.

Thx alot for help . Yes i read that papers and many others written by dr. Hinz and dr. Stein . And i read also whole of dr. Stein blog too . Will be wait for him reply and will update the results here. The big problem of me is far country of mine to DBS lab ....