I'm a little hesitant to post this, as it is still VERY early days, but if there is any chance that what I am seeing is caused by ambroxol, and if it might be replicated by other people, then I think I have a moral duty to put it out and give people the option to test for themselves, or their loved ones.
So, MSA is a rare form of Parkinsonism, very nasty, with an average time to death of around 8 years - or less in the case of older individuals, such as my mother who is almost 70. Very hard to diagnose with certainty, confirmation is often only via autopsy. Which brings me to my first caveat - my mother has a number of atypical symptoms, although MSA can cause a spectrum of effects and the neuro specialists do believe it to be the most likely diagnoses. Still, it is perhaps a note of caution for others with MSA.
That said, I (her son) have been slowly ramping up the dose in accordance with the only official study for Parkinsons, right now she is only a few days into week 3 and on a dose of 180mg x3 per day, taken with food. And this is another reason why I'm so tentative, she's not been taking it that long, yet her condition was improving even after just a few days. I really didnt believe it could be ambroxol at first, because my understanding was that it would take months before benefits were seen. However, the improvements have been (mostly) steady and consistent, and I'm struggling to think of anything else that could cause it. I did previous ramp up her dose of ubiquinol (co-q10) to 900mg, and increase her high dose thiamine to 7g/day from 5g and later 6g/day, but that was weeks prior to starting ambroxol, and I doubt these could cause such a significant improvement.
OK so all those caveats out the way! Her symptoms. A month ago, I would often only get a dozen words or so out of her a day. It was looking extremely bleak. She was socially very disconnected from us, barely taking part in conversations, and her voice was a constant near whisper. She was unable to take part in activities, feeling a sort of sickness or unwellness almost constantly - she couldnt describe it, just said she felt "horrible" all the time, and it seemed to be related to her gut. She might read for a bit, but after a while it would make her feel sick. Even excluding those feelings, her drive was entirely gone. Reduced to watching TV most the day, except for the Herculean efforts of my father to make sure she was getting out for walks daily. Her balance was bad (lots of furniture walking), physically weak, needing help getting out of chairs, and her condition was rapidly deteriorating - faster than MSA should, we thought. For someone who was constantly doing things before, always sorting out the house, cooking, cleaning, finding activities, socially engaged, and maintaining an extremely active lifestyle for someone her age, this was heart breaking. All of these symptoms have decreased, she it now taking part in conversations, engaging with us, being self directed, genuinely SMILING without it being forced, her voice is louder, she is moving easier - not just on her daily walks, but getting out of chairs, cars etc. The differences are striking. However, she also had insomnia before, although intermittent. And that has not improved so far, if anything it is worst, though given how badly it fluctuated before we cannot say with any certainty it is related to ambroxol, and insomnia was not a noted side effect in the ambroxol / Parkinsons safety study. And she is still having occasional bad days in terms of feeling "terrible", but I would not say worst than before, it is rarer and it comes back mostly in relation to when she's had especially bad sleep for a few days. But even when she is feeling rough, the psychological differences are still there, if maybe a little diminished at times - she's still engaging, actively doing things (self-directed), her facial expressions are normalising, more eye contact, voice louder etc. It is hard to say how much better she is in % terms, comparing her now to prior to onset a couple of years ago, but perhaps up to 50%?! At least in terms of her character, psychology, social interactions etc - brain stuff relating to the dopamine systems I guess, her physical issues are improving more slowly. Which seems bizarre from a physiological point of view, since the dopamine (DaT?) scan of the brain showed significantly reduced dopamine uptake, which I presumed meant damaged. So, are they better now?! Were they just "gummed up" before, but the effects on her musculature/mitochondria are more difficult to improve?! We really understand so little about these conditions, but hey, results are results!
Aside, I also have the recently discussed fancy probiotic PS128 incoming from Singapore (both Active and Mind options, will test each), which I am very much looking forward to trying on her given how her symptoms started with and seem to be heavily related to the gut. I'll update on this thread, for good or bad, in coming weeks or months re ambroxol, and note if PS128 does anything.
So! Thats my story. Honestly just writing this is bringing me to tears, I cannot believe I am saying it but if progress continues, could it even lead to a "cure"?! If only partial..... with a condition that is so horrible, and previously so unstoppable... well.... Of course without proper clinical trials there is no way to know if this is truly the ambroxol, or if what we are seeing is in any way reproducible, and who knows -her condition could nose dive again tomorrow, or progress might simply stop..... but.... now there is reason for hope. My heart goes out to anyone else suffering from this brutal condition, or with relatives who are suffering. I wish you all the best of luck!
Addendum - 17 tumultuous days later! Soon after writing the above, I stopped my Mum on her regimen of other supplements, because we ran out and I wasnt sure if she needed them any more. This turned out to be a bad bad horrible terrible decision, and she tumbled back to her old state over a period of a few days. I then bought more and tried to re-start her on them, but there were issues with the dosing of thiamine that complicated things further. However.....she now seems to be back on track. So, a few additional thoughts:
- The repeatability of the improvements we have seen may depend on the other supplements she is taking in combination. They seem to work together, or affect different systems in complimentary ways. I now have her on just 2g/day of thiamine, and a strong b-complex (solgar 100) to assist after reading more reports from Dr Lonsdale etc. In addition to the 900mg/day of ubiquinol, reishi, lions mane, and now 200mg x 3/day of ambroxol. However, to re-iterate what I said above, I had her on these supplements prior to ambroxol, and we didnt see anything like these effects. So, well, they seem to work together, at least for her! Ambroxol dose, I kept her on the same while going through the above complications, not wanting to complicate further, just moved from 180 to 200mg yesterday, will look to increase properly again in the coming weeks.
- Previously when writing above, I had her on up to 7g/day thiamine, as from the Q&A with Dr Costantini he mentioned that HDT works also with MSA, but that higher doses are required (4-6g/day being his stated upper dose for Parkinsons). And while I only very gently took my Mum up to this dose, unfortunately that also meant I didnt realise it was causing other unpleasant side effects, and I now believe her insomnia was caused/worsened by too much thiamine. Although this is something she suffered from before I started her on HDT, there seems to be a correct dose that assists sleep, but above which it worsens a range of symptoms in unpredictable ways. Right now she's sleeping well, her condition is improving, she is become more sociable again, etc etc. So, fingers crossed, but looking good....!!!
Been a crazy couple of weeks, and I have only myself to blame - turns out you should never hard stop powerful medicines, and thiamine in these dose ranges really is medicine. But finally now starting to breathe a sigh of relief!