FYI, this is what the pkg looks like.
I’m trying it this week and I will update! 🙏🏼
Ambroxol on Amazon: FYI, this is what the... - Cure Parkinson's
Ambroxol on Amazon
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MissRita
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What dose are you taking per day?
Well I thought about starting with one dose a day just to see what it does for me. If I don’t see any changes, then I will upped the dose until I see a change. Should be interesting.
Thanks
Hi Rita! Sorry if this was covered elsewhere, where did you buy it? Amazon? I’m going to do the same
MissRita in reply to
Yes!
You can buy Ambroxol directly from European pharmacies, and, imo, the best way to buy it is 75mg slow release capsules--because you can take fewer. The cost of the drug is not so much but if you live in the US the shipping is pricey and takes a while. I buy as many as they will allow at a time. They limit it which is frustrating.
I try to take at least 15 pills a day (that's 1125mg) but feel like it should be 1500. (In a study treating Gaucher's they used 27 mg/kg which in a 70 kg person would be 1890mg)
Here's what I am trying to do: order ambroxol directly as a powder and make my own 500mg or 250 mg capsules. (Take 3! :o) Anyone else interested in figuring out how to do that?
BTW--I DO have a GBA mutation. I'm not certain that makes a difference, but...
Can you share what improvements you’ve seen so far in your symptoms? Thanks!
Complicated. I started taking it several years ago, for about four months...then I entered the Sanofi study (for the GBA drug Venglustat? the one that was just canceled?) and they made me stop. Anyway, I only just started up again.
I can't say I notice any day-to-day symptom differences, but my PD is extremely slow progressing. I do not take any dopamine yet. I am still in stage one. I was diagnosed in June of 2015. I have GBA-PD, which actually is supposed to progress faster.
BUT...
I also eat a very very strict ketogenic diet, and I really believe that makes a difference (autophagy!) I WAS in that Sanofi study, so I took venglustat for 3 years, and despite the fact they canceled it, perhaps that did something?
But I've read a lot about Ambroxol. I think it is promising, NOT for day-to-day symptom relief but for a gradual overall slowing of the disease...and that's what we all really want, right? Either way, I can't find a downside...except for cost. I am frustrated at the lack of availability and I want to change that :o)
I am wondering how much of the ketosis benefit may coincide with what you're noticing with Ambroxol, or as you say, possibly a combined effect? Personally, while I was in ketosis I never experienced brain fog. As you're probably aware, ketosis modulates gene expression to the level that no pharmacological substance can achieve, including inflammation reduction and supplying alternate fuel for the brain. How long have you been in ketosis before starting Ambroxol?
I have found Ambroxol HCL 75 mg capsules. Read it here:
healthunlocked.com/cure-par...
Where did you find that mg? Are you in the UK?
in reply to JayPwP
I’m sorry but I’m not finding a link or info on where to acquire the 75 mg capsules ?
MissRita in reply to
The ones I bought from Amazon and they are 30 mg not 75 mg. I am in the United States are you?
Fighttolive in reply to
Got a qoute from them 10 boxes of 100 75mg for $280 shipping included to USA
Where did you find that?
in reply to MissRita
Hi Miss Rita, All:
I take a wild guess that the Mucolite SR 75 mg, is "sustained release" version.
And maybe the "instantaneous release" version come as 30 mg tablets?
I wonder if this is what people thought they saw some benefit from? Or what was used in the studies?
Perhaps it doesn't matter, but I assume these would have different pharmacokinetic/dynamic profiles...
MissRita in reply to
I’m not sure. I have yet to try it.
I used the Indiamart link from Jay pwp above, downloaded the app and got in contact with the supplier. I did not buy it yet, trying to see if its legit or not before spending 280$$
It seems to be and they wrote me back as well. It comes out to be about $2.85 a pill.
Where did you find that?
I just used the healthunlocked.com/api/redi... link
Is no one concerned about the safeness of doing this? the dosages are extremely high. 4x the highest recommend daily dose. The trial undertaken so far was a small number of people. The CPT one for example was 22 people.
I am desperate to try anything
That's what worries me. The trial results were over a year ago and it's only been this week that people are getting excited about it. There's a sense euphoria and ppl seem to be forgetting safety and common sense.
True, but more people die from prescription medicine than due to disease
What the heck!!
If you read trial results, this has been administered in pregnant women at a dose close to 2,000mg, with no side effects. It's been around for about 50 years and no one has ever experienced any life threatening side effects. On the other hand, people rush to get a "vaccine" which is not a vaccine but gene therapy without blinking twice!
in reply to Despe
Exactly! So well said.
in reply to Parkinsonjisung
You are presuming that we are moving forward in ignorance when I assure you we are not.
Parkinsonjisung in reply to
I truly hope it works and no one has any issues. I've been on this forum a while and I've seen these trends come and go as people jump on the latest thing. But everyone should remember that the trial and research was aimed at ppl with gba mututations which is pretty rare and it wasn't double blinded so the results can be taken with a pinch of salt. I know people are desperate but it's a very expensive experiment based on very little evidence. Again I hope its a success for everyone.
in reply to Parkinsonjisung
It was not only people with GBA
Despe in reply to
Exactly! All PwP can benefit from Ambroxol.
amykp in reply to
I said this earlier abut I'll say again-- I take ambroxol...a lot of it, fifteen 75 slow-release capsules pretty much every day. (Sometimes I just HATE swallowing all the pills YUCK). I did it years ago for months and I am doing it again now. I have no worries, other than that it might not work. The thing is, ambroxol might be a gamble, but PD is NOT a gamble. I know where it is going.
I've researched it too, a lot. It has been given at this high dose (and higher) for years, to folks w/PD but also folks with Gaucher's disease. (Gaucher's is what you have when you have 2 GBA mutations.) They are pretty clear about how it works. Unfortunately, I am not convinced it will do much if you don't take a pretty high dose. :o(
For those who are hunting around: it is commercially available in 30 and 60mg tablets and 75 mg slow release capsules. (And syrup, but that's lower. And injectable, I believe 15mg/3ml). You can order the 75's from German pharmacies, and maybe other EU places...it's not expensive but the shipping...eek.
I am currently trying to order the pure powder from india or china and make my own 500mg capsules. If anyone could figure that out...?
PS--I fast too! And eat keto!
in reply to amykp
I don’t want to get this thread off topic especially considering the importance of the subject of Ambroxol. But, It would be great to learn about how you are doing keto and fasting especially with the medications. I fast and I have a very strict diet but have not sustained keto. I will start a meeting message about keto. It is my hope that you will please share your experience.
amykp in reply to
Because I am kind of a knucklehead about all of this, will you please post the link to your new thread? I always love chatting about diet.
I would love to try the keto diet but I’m not gonna lie I got a try to find a service that will make it for me and deliver it because quite frankly with my job and everything else going on I don’t have the time! LOL
Ketogenic diet and Ketosis are two different. Diet makes you eat stuff that converts to Ketones, does not burn body fat.
Fasting induces Ketosis, uses stored body fat which converrs to Ketones. Dual benefits.
A ketogenic diet puts you in ketosis. You can measure it in your blood.
Fasting puts you in ketosis too.
It is a matter of lowering your blood glucose levels so low that your brain is forced to metabolize ketones (a breakdown product of fat) for energy.
As per Dr. Swank and Dr. McDougall, high fat diet sludges blood flow and effects blood viscosity
High fat also impedes blood electron repelling, which keeps the blood thin, this results in blood cell clumping
37 mins mark:
I believe you are thinking of autophagy. Autophagy is triggered specifically with fasting. I suspect you are right that a keto diet will probably slow it. Eating anything probably will. But anyone who tells you they know for certain what does what to halt/speed up autophagy is lying. There are no conclusive human studies on it...yet.
Ketosis, on the other hand, is triggered when your body runs out of glucose, whether it is because you are eating only (or almost only) fat, or eating nothing at all. In terms of metabolizing ketones for energy: keto diet vs. fasting...your body does not know the difference.
(Strict keto diet, that is!)
The other thing you might be thinking of is weight loss. If you are trying to lose weight, and you eat a TON of fat in a keto diet, your body might not utilize as much of its own. That's not to say you can't lose weight with a keto diet--you certainly can and likely will, but if you really overdo it you will supply all you need from what you eat.
BTW--Dr. Swank proposed his theory...to treat MS...in 1949. Check him out on Wikipedia, en.wikipedia.org/wiki/Swank.... Check out Dr. McDougall: en.wikipedia.org/wiki/John_...
They are both pretty far out there
You mean, you eat only prepared food? Or in restaurants?
Not in a restaurant I mean the kind of food service where they have meals like breakfast lunch and dinner delivered to your house on a weekly basis.
I mean, how do you eat now? Because keto isn't all that different--just the ingredients...
I eat a lot of pasta, and some bread. I love steak and chicken but it’s hard to digest.
Ah. Do you like eggs? Or bacon or cheese? Or green veggies? I don't eat a ton of meat either. There IS a way to eat a lot of pasta and bread but it is either expensive or you must make your own. (Which I do, in big batches, then freeze...and I will give you recipes if you like...)
Love all of that! Would love recipes!
OK! First of all, head over to dietdoctor.com/low-carb/keto and check them out. DON'T JOIN...you don't need to. There's plenty of free advice.
If you are a bread/pasta lover, check out shop.kingarthurbaking.com/i....
It is the best substitute I have found. It is crazy pricey, but my local grocery sells it at half the price when it goes on sale, and sometimes amazon puts it on sale too. I literally buy 20 bags then. I make bread/biscuits/cookies and freeze.
I eventually bought my own electric pasta machine, an idiot proof one, where you open the lid, dump in flour, water, an egg, press a button and spaghetti comes out the other end....boom. Homemade sauce--crushed tomatoes, olive oil, garlic, spice.
For the rest? I eat (green!) veggies drowned in butter/olive oil. I drink coffee with heavy cream, cheese melted over stuff, eggs, some meat, berries, avocado, nuts, salads...
Zero sugar, BTW. So, almost nothing ready made, unless you read ingredients.
There are plenty of sugar substitutes, and more coming down the pike. Monkfruit, eyrthritol, bocasweet, allulose...I make a blend.
That is why I also do 16/8 IF, helps repair organs and detox.
in reply to JayPwP
Me too! I do 16/8 IF daily. And OMAD on occasion but I’m going to increase OMAD to at least 2 days a week in hopes of autophogy.
JayPwP in reply to
Autophagy after approx 50 hrs of fasting
JayPwP in reply to
Now I know the secret of your beauty!!!
in reply to JayPwP
Who, me?!?! I’m going to be optimistic and presume that very generous compliment was to me.
Thank you!
JayPwP in reply to
Yes! You!
Here's another thread where I have said the same thing:
healthunlocked.com/cure-par...
in reply to JayPwP
Thank you my friend. You lift my spirits.
I hope it works!
how is the Ambroxol experiment going?
I'm wondering how everyone on this thread is doing with their Ambroxol ?
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