I usually only post on the TBI/post-concussion forum, but i regularly check other forums when bored, so I happened to stumble upon this thread and thought I could offer a little insight into it.

What they found in regards to the drastic effect of only changing the amounts of L-dopa by 120 g is that both taking too high of levels of L-dopa and too low of levels of L-dopa shows the same clinical symptoms. By reaching the absolute correct levels needed by the system for function to be restored is when symptomatic alleviation occurs.

They are able to get to such high levels of L-dopa because they are able to eliminate all side effects that are normally associated with the intake of L-dopa. Normally you reach a dosing barrier level when taking L-dopa by itself or with Carbidopa which then leads you to not being able to increase the levels. The issue with this is lets say you are only able to get 3000 mg of L-dopa before the side effects become intolerable. You are still left with many symptoms of parkinsons disease but you are unable to get the the levels of L-dopa needed because of the inability to raise the levels of L-dopa due to side effects. They have found you can manage and eliminate all the side effects associated with the intake of L-dopa by correctly balancing the levels of intake of L-dopa, 5-htp, L-Tyrosine, and L-Cysteine. The side effects of L-dopa intake is an imbalance in dopamine and serotonin in the competitive inhibition state. By giving correct levels of 5-htp you are able to get to the dosage needed by the system for symptomatic alleviation.

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.

who in the world can take 89 pills? they can't be serious.

I will give more history on my father to help clear up any confusion. However in his initial diagnosis I was only 13 years old and my father was fairly secretive of his condition in the beginning.

My dad was an avid bicyclist. He rhode daily. Which I believe helped enable him to stay off Parkinson's drugs for the first 5 years. He was also paranoid of prescription drugs in fear of dangerous side affects. Which is why he tried to avoid taking c/l for so long. It took him dozens of falls until he finally gave in and resorted to medication. I'm unsure of his initial doesages, however his current dose is stalevo 150 4 times daily and Azilect 1mg 3 times daily. He has tried other drugs, sinemet, rytary etc but none have any effect on him. He is scared of dbs and prefers a more natural treatment, hence the amino acid protocol.

Immobile might have been the wrong word choice. Usually when hes on his "on" time he can move around but cannot walk without assistance. His off time is an immobile state. I have to carry him to the bathroom, dress him etc. however it is 100% unpredictable and sometimes the dose has no effect at all, sometimes it works better and he can walk on his own.

It is true, these past 2 years he has had a rapid decline in his condition. He is depressed, but I think I am more depressed than him. he was extremely active, hiking, biking, running, swimming, to being wheelchair bound this past year has been tough on me to watch as his caregiver and his son.

I will update as my dad goes through the treatment. Thanks for everyone's insight and help.

your dad is at half the maximum strength of stalevo. has he tried higher doses or added in plain C/L?
https://www.pharma.us.novartis.com/p...df/stalevo.pdf
are you sure about 3mg of azilect? i've never seen anyone taking more than 1mg except in a clinical trial and that was 2mg and it was no more effective than 1mg, 3mg might be dangerous, plus incredibly expensive. if this is true i'd talk to his neuro asap.
C/L should have an affect on him if stalevo works, it's C/L with 1 more ingredient which inactivates an enzyme which breaks down the levodopa in peripheral tissue and the brain and allows more l-dopa to reach the brain. stalevo just gives you more on time so you can take it less frequently.
your're his caregiver, i'd try to find a 2nd opinion and the best MDS you can find. if you try the HINZ protocol hope you have the next step planned if it turns out to be an expensive failure. i tried some wild procedures like chelation therapy, didn't help and the mantra was always, "give it more time" as i paid $125/week for infusions.

Best of luck to you Jeff, I'm sure your Dad is proud of you. Let us know how the therapy goes.

I apologize, it is 1mg of mirapex 3x/day.

He already has mild dyskinesia while on stalevo and upping the dosage aggravates it.

Unfortunately his Dr. Is already preparing us with the mantra, "should take ~3months to see results".

He has a consultation with Stanford in November. Hopefully they have some new research or trials going on.