I’ve posted before about our trials with synthetic and natural levadopa but after reading Dr. Jonathan Sackner-Bernstein‘s essay, I wanted to shout a big “hooray”! I’ve long suspected levadopa was doing more harm than good and that the whole idea that PD being all about dopamine deficiency was in some way inncorrect.
For those interested, a recap of our levadopa experimentation:
After ten years of medicating with C/L and eventually at the maximum dose per day, he was experiencing major side effects like head dyskinisia, hallucinations, memory and cognition problems, delusions, compulsive behaviors, and barely understandable speech and severe ‘off’ periods. This was his state when I started as his caregiver. At first we both thought these side effects were symptoms of PD. As I began studying up on PD, I learned they were all side effects of C/L. I tried getting answers from his neurologist(s), only to be told there were no alternative treatments to the standard C/L and in fact, was advised he should take more.
Naturally, I grew suspicious. I found this forum and learned about mucuna and B1 HCL. B1 seemed slightly helpful but not miraculous.
We began the long road of titrating off C/L and on to mucuna. This definitely helped. He no longer gets these side effects, except some dyskinisia, unpredictable ‘off’ periods and occasional unclear speech, when he has levadopa.
After realizing he feels almost normal when he wakes up in the morning and reading about a HU member that tried delaying the daily start of medication, we decided to give that a go. Every couple weeks we delayed the first dose a half hour later. So whereas he used to start taking mucuna at 9 am, now he starts at 6:30 pm and takes another dose (2 and a half Barlowe’s brown Indian mucuna) at 8:30 pm and 10:30 pm.
This has been his routine for about a year. What I’ve noticed is, though he’s pretty low-key during the day, he’s sharper, speech is clearer, no dyskinesia, and no ‘off’ times- until he starts taking mucuna in the evening.
Mucuna does seem to help him (when he’s feeling ‘on’) with walking (using a walker)- he can walk faster, straighter and longer. He also seems more energetic with mucuna in his system, although when he’s feeling ‘off’, he can barely move at all and these off times happen at random times almost every night, only to be remedied by a double dose once it kicks in.
If you’ve gotten this far reading, thank you. I hope sharing our experience is beneficial in some way.
Now that I’ve read Dr. Jonathan Sackner-Bernstein‘s essay, we’re going to try once again delaying medication start by 1/2 hour every couple weeks, until he doesn’t take any at all, if possible. I wish there was an alternative treatment option to try but as it’s probably years off, looks like for supplements are the only hope.
The supplements he takes now are:
B1 hcl (2100 mg), B12, B2, magnesium threonate, lithium orotate, Biokult probiotic, D3/K2, melatonin, and boron. Thinking of adding B3, B6 and NAC, although I’m confused about which to try- N-acetyl l-tyrosine or N-acetyl cystine. Please advise if you know and if there are other supplements you recommend.
As always, we are very grateful for this forum and wish you all the best.
-Angie
Has anyone with PD changed medication, when the initial one was not working? 
Agonist versus Levadopa
B1 Thiamin
When does supplementation become toxic or counter-productive?
Mannitol and B1: What’s going on?
