Good question, and I’m glad you asked it, as it could be one of the few reasons I can think of as to why more people with PD haven’t tried Ambroxol, the others being:
1st awareness of Ambroxol as a significant treatment option or lack thereof seems to be a main reason why more people with PD aren’t trying it – that we will need to address in forums just like this one to get the word out to do your due diligence. If you ask me why you haven’t heard more about it, I would suggest to you that the big pharmaceutical companies have a huge role in what you know about, and since there is really no money in Ambroxol for them, they’re not going to promote it. The money is in drugs that have patents, not 50 year old repurposed cough medicines.
2nd there are trials underway that won’t complete for some time yet, so you might say the jury is still out on just how well it will work to slow PD progression – that said, given its safety and the positive results of trials completed to date, why wouldn’t someone with PD at least try it?; for me it is critical that you slow or stop this diseases’ progression as soon as you can, at a later state with much worse symptoms, I’m not sure how much of that damage you can reverse. This is a 50 year old cough medicine found to be I believe safe for pregnant women to take at the PD trial dose, should a person with PD really wait maybe 2 more years to try it when by then they could have dementia? In my view absolutely not. For me at least, enough of the jury is in for me to take an old cough medicine; I cannot and will not wait another 2 years to try something that is available now, is safe (at least for me to-date from 6 months of taking it, and from my research on it), inexpensive (dare I say cheap?), and could really work on my PD now (and so far is), my disease is certainly not waiting.
A 3rd reason could be that in the UK at least its hard to find a reputable place to buy it, as it is not sold in UK drug stores. Well, you could go to France where it is an over the counter medicine and buy it, or simply find it online from a variety of sellers from very different countries (I believe in it so much, I even started an online store for it). As always, do your due diligence on Ambroxol, potential side effects, completed trial findings, etc., and talk with your neurologist about it, I did. My doctor read the research and basically said go ahead if I wanted, and I’m extremely glad I did. Every day when it clears away the PD fog, mitigates my shoulder pain, and gives me a little more motor control, I’m reminded of just how glad I am that I did, and did not wait. .
As to your question, will it help me if I don’t have the PD gene? Here’s what the findings from the recently completed trial say (link attached): “Findings In this open-label clinical trial of 17 patients with Parkinson disease, Ambroxol crossed the blood-brain barrier and bound to the β-glucocerebrosidase enzyme, and it increased β-glucocerebrosidase enzyme protein levels and cerebrospinal fluid α-synuclein levels in patients both with and without glucocerebrosidase gene mutations. Meaning Ambroxol therapy has potential for study as a neuroprotective compound for the treatment of patients with Parkinson disease both with and without glucocerebrosidase gene mutations.” Essentially for me the answer to your question from that is yes, it could help you whether you have the gene or not.
My apologies for the long winded answer, but I have to admit I have been very confused by just how few have tried it given its potential PD life changing outcome, and needed to put that out there for community thought.
Again, thanks for the question!