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[ASIA8]

Hi I am new to this site. Had PD , was diagnosed Feb 2017 but have symptoms slowly emerging since Aug 2015. On herbs right now with LDN .5 mg but body is declining.Is there Anyone taking herbs only ? Just ordered mannitol aka syncolein

[parkie13]

You could start taking NAC. Plus exercise, both walking and another kind that appeals to you. Stay positive good luck

[ASIA8 in reply to parkie13]

Thanks

[ASIA8 in reply to ASIA8]

Thanks

[Gitmo1995 in reply to parkie13]

I am be in the wrong forum, My viisoum but my vision is so blurred o day because of PD I am trying on my not so good touch typing.. anyway, PD sure can problems for daily living.

[ASIA8]

I haVe a question , does mannitol have to be taken with caffeinated beverage ?

[Xenos in reply to ASIA8]

You can take it the way you like : with beverages (coffee, tea, OJ...), with or without food, any time of the day

From my experience it's better to respect the dose according to the CliniCrowd pages. It depends on your body weight.

Do subscribe to Clinicrowd and take the opening and then monthly questionnaire : it's totally free and can be of great use when their database will be large enough.

Lastly, Syncolein in my opinion is just a way to financially profit from the mannitol

experiment. It's not supported by Clinicrowd, and never was tested. I buy simple mannitol. It's a sweetener known from the ancient times, and sold like everywhere.

[Beckey in reply to Xenos]

I've had a devil of a time finding it!

[Xenos in reply to Beckey]

There is one big Internet store, the name of which begins with "Ama" and ends with "zon" that sells at least three brands of it.

I buy directly from the specialized store BulkSupplements. There are others. I paid USD 75 for 2 kg and shipping.

[dreem in reply to Beckey]

amazon

[dreem in reply to Xenos]

I can not buy it like everywhere. I buy it on amazon

[Beckey in reply to dreem]

When Amazon quits advertising on Breitbart I'll do it.

[dreem in reply to Beckey]

If I could buy it some where else I would, I have been off it for 3 months after taking it for 3 months and there is a difference to my comfort, not a lot, but enough that it matters.

[Beckey in reply to dreem]

Wow, that's interesting. So off it, do you feel better or worse?

[dreem in reply to Beckey]

I feel worse off. I went back to not being able to smell anything, tremors are a little worse and right arm has had some soreness. but I also drink sleepy time tea and take NAC.I take half my meds when I take these and also exercise most of the time. It don't matter what I do or do not take I always hurt at the end of the day and the first hour after getting up.

[ASIA8]

Thanks for your advices

[Eliza-Jane]

I was diagnosed 12 months ago and tried acupuncture, naturopathic drops which did help my anxiety but not my tremor in my arm. Meditation helped. I exercise and walk daily. My neurologist said that I was trying everything except the Stalevo medication he had prescribed. OK, I started the medication and my tremor disappeared. The medication gives me nausea on and off. I haven't received felt really well since starting the medication. I now have dyskinesia showing up, which is unwanted movements which is caused by the medication. I start licking my lips repeatedly and twisting my arm upwards and closing my hand into a fist. I want off the medication.

Now I find that the medication is/can be addictive! I am determined to get off medication and I see a hard and unpleasant road ahead. Try anything and everything before starting on the medication road. Follow your instincts. You may have no alternative in the end, but don't be pressured into anything. It's your body and you alone have to live in it.

[Joynb in reply to Eliza-Jane]

Have you sought a second opinion from a movement disorder specialist? Perhaps the dosage or timing of your medication is wrong. Don't put up with your current problems, and please don't write off the medication on which your future may well depend. Go back to your neurologist and press for change, get a second opinion, do everything possible to make it all work better for you.

[Beckey in reply to Eliza-Jane]

Did you try mucuna?

Also, there are current trials underway for inosine and NAC. Would you be interested in joining either of those?

[Eliza-Jane in reply to Beckey]

Thank you Becky and to everyone who has left comments and suggestions. I just had a quick look to see what inosine and NAC are. I will look into it. I would be interested in going on a trial as long as I wasn't taking Levodopa. I would also only undertake a trial where I would be continuing to take Red Krill Oil. I was losing my voice, people were really having trouble hearing me. I was practising voice control but often forgot and it was just too hard speaking in groups, also on the phone. I had also lost my signature. It looked like a tiny squashed spider. I started taking 2x1000mg strength Krill Oil capsules a day as I read it helps your brain. One month later my voice was as strong as ever, and when I had to sign for a parcel at the PO the other week I signed my signature which I had lost sometime ago. What a shock! I continue each day with the capsules and that says to me there is help for us with PD to re-establish what we have lost.

Are you on a trial Becky?

[Beckey in reply to Eliza-Jane]

No but I think I'm going to try to get in one.

[ASIA8 in reply to Eliza-Jane]

Grateful for your advice. Have you tried LDN ? Low dose naltrexone?

[Fava-1 in reply to ASIA8]

no, haven't tried LDN

[ASIA8 in reply to Eliza-Jane]

Thanks for sharing your experience. Trying to avoid drugs.

[Fava-1]

I am not taking pharmaceuticals, just herbs, fava beans and the tinctures I make from fava plant parts. Now also eating nuts for extra thiamine (b1) and papaya. Doing fine since starting to grow favas in 2009 Now eating nuts, have nearly stopped the l dopa. Was taking 2 droppers full 5 times a day and am down to one dropper full 1 time a day. This has only been since February. So, I am very excited . Aunt Bean.

[ASIA8 in reply to Fava-1]

Do you know where we can buy favA tinctures?

[Fava-1 in reply to ASIA8]

Don't know where fava tinctures can be purchased. I have a full time job for weeks just making enough for myself. I think there are companies that sell products from fava.Just google it and see what you vcan find. There are many that sell mucuna produ

[Islandhappy in reply to Fava-1]

Read your past posts. Tried putting Lima beans in my smoothly and eating a couple of tablespoons of beans during day. Am sure it helps the tremor. Working with morning dosage of now mucuna instead of cd/led

[Fava-1 in reply to Islandhappy]

Good for you. So many beans and nuts have amazing benefits for us. try papaya in your smoothie too!

[Astra7 in reply to Fava-1]

Roughly how much fava bean do you consume in your drops? I am eating dried ones available as a healthy snack but don't know if I'm eating enough. They are a bit dry!

[Fava-1 in reply to Astra7]

Right now, since starting to eat a lot of nuts for supplementing thiamine (b1) I have cut way back on need for ldopa. Now only taking about 15 drops of tincture once a day, compared to 220 drops in January ,before starting nuts. I don't know anything about dried favas, or even if because of processing that they even have ldopa. See if you can check with the people who make them or have them analyzed by a chemist. Good luck!

[Fava-1 in reply to Astra7]

The main tincture that I take are made from the flower buds. I also make tincture from bean pods...you might could make your own with dried beans. Dont know if it would work or not. I use fresh pods., that are cut up small.

[Islandhappy in reply to Fava-1]

I use papaya and pineapple plus other things like blueberries, spinach, flax seeds,avocado etc. looks bad but tastes ok. I think flat beans have some dopamine. I don't have a reliable fava source and no garden

[Serenity_finaly-1 in reply to Fava-1]

youtu.be/H1oSwsuzIis(Not working as expected?)

[Fava-1 in reply to Islandhappy]

thats great

[ASIA8 in reply to Fava-1]

How much favA do you consume daily ?

[Fava-1 in reply to ASIA8]

right now, I am only taking about 39 drops of tincture a day

[Islandhappy in reply to Fava-1]

Interested in tincture. source?

[Fava-1 in reply to Islandhappy]

did you find a source that makes fava tincture?

[Islandhappy in reply to Fava-1]

No yet. Needto search. Remember seeing instructions to make

[Fava-1 in reply to Islandhappy]

I do have instructions for making tinctures and a downloadable pamphlet on Robert Rogers site Parkinsons Recovery on fava blog.

[LSGGLillian in reply to Fava-1]

Where can I get blood test to tell if I can take fave beans safely?

[Fava-1 in reply to LSGGLillian]

any dr can order a G6PD blood test

[Fava-1]

I am using very little now. Seems the fresh blackberries , papayas, and other berries and fresh vegies in combination with the nuts for thiamine are supplying something important that my body needs. I am only taking tincture about once a day right now. Aunt Bean

[Fava-1]

good for you super nutrition and exercise are so important...take the monkey by the tail and keep him off your back. Aunt Bean

[Fava-1]

Ask your physician to do a G6PD blood test for the enzyme deficiency called favism. It is dangerous to eat favas if you have inherited this condition.

[Fava-1]

yes I just take herbs and natural l-dopa. doing very well with it.