Altremorine - a cure?!

[Marcomando]

I attach a link to a scientific paper that was posted to a page on FB called 'Livebetterparkinsons'.

Article:

livebetterparkinsons.com/fi...

Paper:

scitcentral.com/download.ph...

The original post was trumpeting this as a major breakthrough. A little checking shows it's a product based on broad/fava beans which we've known for a long time contain a source of natural dopamine like mucona beans. However I thought that ingested in the usual way it didn't cross the blood brain barrier very easily...

These Spanish scientists seem to be claiming that this compound not only delivers dopamine to the brain but it seems to have neuroprotective abilities and may slow or halt the progress of the disease. With no side effects. Hallelujah!

Except (in case you can't already tell by my tone) I'm sceptical. I seem to have a natural source of cynicism that has no problem crossing any barriers!.

If it was that good surely it would go to a much bigger trial get full FDA/NICE approval and so on. Instead if you follow the link you can buy the pills at E65 a bottle. However I'm willing to be open minded.

I'm new to this - dx at the beginning of this year and still comparatively minor symptoms.

What do you much more knowledgeable people think?

BW

Marc

[Catlou]

kind of expensive to try a bottle

[hanifab23]

where is the site to order it

[Marcomando in reply to hanifab23]

Here: atremorine-viaphyt.com/

[hanifab23 in reply to Marcomando]

Thank you the site is not in English

[Marcomando in reply to hanifab23]

The link I posted last is in English

[Hidden]

I'm sceptical

[park_bear in reply to Hidden]

Yeah, just a little. From the web site :"AtreMorine® is a food supplement Rich in natural L-Dopa". The research paper very nicely gives chemical structures for all the current PD meds in use but nothing for the components of AtreMorine. Since they are already selling it commercially without a patent pending notice it is too late to get a patent in some countries. They would surely have a patent if they had anything worth patenting. They do have a patent on the extraction process but none on the substances. I am suspicious.

[hanifab23]

please tell me if any one has tried it

[Astra7]

I am pretty cynical but I don't think waiting for the FDA is going to work for us. Why not try a bottle. It's a small price to pay if it works! Let us all know!

I would try it but I'm currently trialling NAC - very good results - and am about to trial mannitol.

Disappointed my neuro had never heard of NAC, but he nodded sagely as he wrote it down!

[park_bear in reply to Astra7]

Better that he nodded sagely and wrote it down than to have ignored or rejected it. I agree we cannot wait on the FDA, OTOH alleged cures are a dime a dozen so we have to exercise some selectivity. Taking NAC also.

[Astra7 in reply to park_bear]

That's true.

Do you find the NAC helps? Do you have much anxiety?

[park_bear in reply to Astra7]

My dental hygienist noticed there were no tremors visible on my last visit, unlike prior occasions, so I believe it is helping.

I do not have PD related anxiety.

[hanifab23 in reply to park_bear]

which brand NAC do you take and how many

appreciate your response

[park_bear in reply to hanifab23]

Sorry to have taken forever to reply. The reputations of supplement suppliers are been unfairly besmirched by inaccuate hatchet jobs. Here is an account of one such: tinyurl.com/zbawjdw

So you can feel reasonably safe in ordering from whomever you choose.

My personal recipe is:

I obtained NAC bulk powder from Powder City. I add to that 25% by weight calcium hydroxide to neutralize the acidity. To that I add enough calcium ascorbate (vitamin C) so that I end up with about 400mg NAC in a 00 capsule, which I take 3x /day.

[fondrees in reply to Astra7]

nac is a necessary and rate limiting precurser for dopamine. along with tyrosine. it has a myriad of benefits for all kinds of health issues.

[glenandgerry in reply to Astra7]

Keen to hear how you get on with the Mannitol! Please keep us posted. Thanks.

[fondrees in reply to glenandgerry]

wat is mannitol supposed to do?

[glenandgerry in reply to fondrees]

It helps improve symptoms of some people but seems to do very little for others.

From reading here on HU, it seems improvement in sensevof smell is the main one.

My husband has been taking it for years on and off but I've not noticed any specific symptom improvement.

At first he couldn't tolerate it as it gave him such awful wind, but he's gotten over that now.

[ecurb in reply to Astra7]

@Astra I have also just started on Mannitol (5 days, 2 tablespoons in a cup of Nescafe generally on an empty stomach). Nothing to report as yet. I am also into my 9th day of Azilect although first 4 days I took half a tablet early morning, since then full tablet also early morning. The last few days I have had some positive results with less rigidity of my diaphragm at different times throughout the day. The rest of my medication is unchanged, i.e. 7 Madopar 125 and 1 8mg Neupro patch per day.

I also ask : what is NAC.

[Astra7 in reply to ecurb]

N-acetyl-l-cysteine. It helps the body make glutathione - an antioxidant - and also taurine which helps with adrenaline. It is also used to help Tylenol overdose.

It is being trialled for PD so I decided to do my own trial with excellent results. 600 mg a day and I feel much clearer mentally (speech and memory), and also much less muscle rigidity in left leg and minor tremor in left arm gone. Still no arm swing though.

You can double dose but it makes the mouth a bit dry for a few months when it seems to pass.

I also take azilect and magnesium.

Really interested to hear how the mannitol goes.

[ecurb in reply to Astra7]

Hello @Astra7, there are many brands of NAC, which do you take and who is selling it. As for Mannitol I have just over 3 months supply at 2 tablespoons a day. I will not go any further than that unless I feel it does some good.

[Astra7 in reply to ecurb]

I am using a brand called Swanson but it is Australian and I don't know if they ship overseas. I had another brand which didn't smell of sulphur and didn't seem to work as well, but it's very hard to be objective when there are so many variables. I have recently doubled to 2 x 600 mg a day as the dry mouth side effect has disappeared, and I feel very good physically.

[Isthistheone in reply to Astra7]

Hi Astra7. When are you going to start the mannitol trial?After reading the Tel Aviv Israel researchers findings, I ordered 2 pounds and took my first dose Thanksgiving morning. I dissolve one tsp into my cup of hot coffee each morning.

I went this route only after consulting w my Neuro. He listened as I explained my worsening condition. My Neuro is a young and very bright movement disorders specialist, obviously his opinion I put much trust in. He increased my carb levo dosage and started me on Avantadine. He didn't comment on the mannitol.

I'll give this a month, and will post my reactions and observations o/a Jan 1, 2017.

[Catlou in reply to Isthistheone]

i too started mannitol about 3 days ago. 16 grams or two tablespoons in a cup of coffee. gives me gas haha. but i do feel different - better but cant explain how yet. i saw in the article fruit flies took 4 weeks and mice 4 months to reduce the clump of synuclen (i know i spelled this wrong) in brain by 70%. i also take NAC 600 mg 2 x day and Israpadine calcium channel blocker for blood pressure which is also in trials. gee - something has to help.

[Isthistheone in reply to Catlou]

Teaspoon or tablespoon? I use 1 teaspoon. Today is end of week one. Gl.

[Catlou in reply to Isthistheone]

it goes by your weight. you can check out that link that somebody posted but i take 16 grams which is 2 tablespoons. i bought the bulk Mannitol on amazon and picked the one with the red outreached body on the front.

[Isthistheone in reply to Catlou]

google.com/url?sa=t&source=.... I've seen the weight ratio somewheres. The writer in the above article is using 1 tbs once per day. Starting tomorrow I'll boost it to 1 tbs. Moderation is key. It took yrs for us to develop and show symptoms. This is not going to get better in a week or two. Gl to all!!

[answerseeker in reply to Isthistheone]

Hope everyone trying mannitol goes to the Clinicrowd.info website to register, take their survey and register to get their protocol for deciding dosage. The amount is based on weight but the maximum recommended is 2 Tbsp. per day because that is what has been determined by the FDA to be safe for human consumption. Check it out.

For my husband's weight his dose is just 1 tsp. 2X/day. I started him really low and will work him up to 1 tsp. 2X/day. He is actually doing better after finally starting C/L 10/100 mg 3X/day and getting more sleep and exercise again as a result of not being so slow. He started with 1 pill and increased by one a week. No rush. He is 80 and still working so I never start anything at full dose to see how he is going to respond without knocking him off his feet so he can't work. To him, that is so important and many feel it has helped him in many ways.

As I see it, Mannitol looks promising but so did a lot of other things we tried over 12 1/2 years, a lot helping for a good period of time but always symptoms creeping along periodically.

Clinicrowd.info asks you to come back and repeat the questionnaire once a week for the first month and then once a month as long as you take it. WE all can benefit by this being an informal clinical trial since there is not any profit in it for companies to support. Perhaps if the results are dramatic enough, a PD organization will invest in a human trial.

[Astra7 in reply to Isthistheone]

I just need to order some then I'll give it a go. I'm interested to hear how you go as well.

[munchybunch in reply to Isthistheone]

Hi, I ve heard you must wait 2 - 3 months to get a result. Good luck. We are still awaiting our order but it sounds promising!

[Isthistheone in reply to Isthistheone]

Sorry this update is late regarding my Mannitol usage. The dosage for me is 15 grams per day. This stuff is very light and fluffy. You will need a gram scale to be accurate on your dose. The first week I took 7-8 grams. OK no problems so I went to 15 grams. Yep it makes you gassy, not bad though IMO.

At Christmas we were at my daughter's. Everyone came down with the flu. It was so bad, I couldn't keep anything down for three days. After that I started back up again. For the last two weeks I haven't taken any. I've been having problems with dizzyness after standing up and going to the kitchen upstairs. Last year I had this same problem. Got thoroughly tested, my heart and lungs are fine. Carblevo, selegiline and amantadine all list dizzyness as a side effect. Also amantadine lists edema as a possible side effect, another problem I'm currently having. So I thought it best to forgo the mannitol until I see my neuro.

My mannitol usage was positive. The meds we take for PD causes "brain fog" at least for me. Happy to report that was gone after two weeks. The extended release carblevo (50-200mg) that I needed to get through the night, I don't need to take anymore. I also have been able to cut back on my daytime carblevo usage. I can't say for certain that this is due to the mannitol or Amantadine or both. I started taking Amantadine 3-4 days after I started the mannitol.

I know I'll get back on mannitol, but I need to fix the dizzyness and edema first. These two issues persist after being off mannitol for two weeks. My problems may be my meds and hopefully only a little more time will sort this out.

Stay strong and keep moving.

[hanifab23 in reply to Astra7]

how much NAC are you taking

[BUZZ1397]

Controlled testing is necessary to prove a medical treatment, of course it is good to be skeptical of untested claims.

[BUZZ1397 in reply to BUZZ1397]

I'm currently testing wicked ram an IPA that purports to have a high level of hops. Yummy :).

[Catlou in reply to BUZZ1397]

Yum

[BUZZ1397 in reply to Catlou]

Wicked Ram is a bitter brew. Its bitterness value (IBU) is 55, that's high. It is so hoppy that on first taste my impression was, I am drinking wet hay.

[Tamarisk]

What is NAC please?

[Catlou in reply to Tamarisk]

buy1 get 2 free at puritans pride'

N-Acetyl Cysteine (NAC) 600 mg

600 mg / 60 Capsules / Item #000214

[soup]

Not sure I'm more knowledgeable but I finally found the two lines on neuroprotection and it has been observed in vitro and in animal studies.

The researchers here did neuro imagimg scans but I did not find the results. So, I'm not convinced this was more than just a hook to get people interested at this stage.

I have a question for the old hands and informed 'newbies'.

My understanding was that high levels of dopamine in the blood do not necessarily translate into high enough brain concentrations because of the blood brain barrier, as mentioned before. Not only that, high blood Dopamine concentration can cause nerve damage in the body leading to peripheral neuropathy. That is why dopamine therapy is given in combined with chemicals which will penetrate and carry the therapy to the brain and out of the circulation.

My question is, "Is that still the general understanding?"

[David73]

Having read the facebook posting, prompted by my wife, and these 30 odd comments this seems to me to be a marketing exercise and not the paradigm cure that it looks like on facebook. As my wife's husband I am extremely sceptical and think this will turn out to be another case of raising false hopes. Without scientific support My opinion is to leave it alone until actual proof is provided. David

[Blackfeather]

Well, maybe I'm a sucker. I ordered a bottle. Should be here soon. I will let you guys know my results.

[PatriceLake in reply to Blackfeather]

Me too

[jaberalhddad]

I received my bottle yesterday and started using it immediately , the bottle comes with a plastic spoon the product it self is a grass powder has almost a smellier test of a green barely grass the frustrating thing is that all the writing on the bottle is in Spanish i think , so far i didn't feel anything its not like Mucuna where you feel it after 30-45 minutes , i will give it a two weeks trail if still no result i will stop it .

[Catlou in reply to jaberalhddad]

So anything you can share with us?

[munchybunch in reply to jaberalhddad]

Hi, how did you find Mucuna? My husband has pd and is a year in and I ve heard a lot about it but dont really understand the dosages etc. He is just on Pramipexole and Azilect. Do they combine? Tahnks so much

[jaberalhddad in reply to munchybunch]

I don't have a good knowledge on Mucuna dosages iam using Dopaboost its a combination of Mucuna pruriens which naturally contains L-DOPA , EGCg (epigallocatechin-3-gallate), acetyl L-tyrosine, quercetin and vitamin B6 .

I take two capsules after the sinemet in morning and afternoon .

Its better to look in this forum for silvestrov posts on Mucuna .

[jaberalhddad]

So far nothing , maybe it needs to be combined with another compound to get in to the brain i.e (EGCG or Qurectein ,....).

[maryalice]

Thanks,someone sent the same article too me. I'm trying to find out more about it. Like you, I am a little sceptical. I'll let you know if I find out more information.

[Pelley]

Smoke and mirrors I'm afraid

[juliog]

Very interesting, thanks for the info. Here's another new development you might find of interest:

medicalnewstoday.com/articl...

It should be available relatively soon. Of course my own skepticism mekes me suppose that before these products are introduced in the market, big companies will make sure they don't cure but only relieve symptoms, so as to have people buying on a lifetime basis

[Motherfather]

well no 1 its more expensive i think from memory it was closer to 85 or 95 euro cheaper if u buy a pack of 4 it cost me around 700 to 800 dollars including postage that was 8 small containers u have to take about 5 or 6 table spoons of it in yogurt tastes revolting as well comes in a small plastic bottle 75 g so not a lot in it it dont last long. it just dont work its the same as taking 1 madopar 200/50 tablet.its a big rip off.im 70 as well and they are taking people 2 the cleaners.you can buy a big bag of the beans in the super market.and make your own for a few dollars..its in frozen section.