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
New: Hi I am new to this site. Had PD , was... - Cure Parkinson's
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You could start taking NAC. Plus exercise, both walking and another kind that appeals to you. Stay positive good luck
I haVe a question , does mannitol have to be taken with caffeinated beverage ?
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.
I've had a devil of a time finding it!
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.
I can not buy it like everywhere. I buy it on amazon
When Amazon quits advertising on Breitbart I'll do it.
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.
Wow, that's interesting. So off it, do you feel better or worse?
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.
Thanks for your advices
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.
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.
Did you try mucuna?
Also, there are current trials underway for inosine and NAC. Would you be interested in joining either of those?
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?
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.
Do you know where we can buy favA tinctures?
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
Good for you. So many beans and nuts have amazing benefits for us. try papaya in your smoothie too!
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!
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!
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
How much favA do you consume daily ?
right now, I am only taking about 39 drops of tincture a day
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
good for you super nutrition and exercise are so important...take the monkey by the tail and keep him off your back. Aunt Bean
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.
yes I just take herbs and natural l-dopa. doing very well with it.