New and looking for guidance

I am newly diagnosed and have been reading all of your posts for several weeks now and am sure glad I found this site! I would like to treat my symptoms as naturally as possible and have read and re-read many of Silvestrovs posts but am a little confused by all of the great information. Which supplements should I start with?

The first thing I tried was NAC, because it seemed like one of the most promising supplements, and it made me very nauseous and dizzy. Will the nausea get better if I stay on it?

I am currently taking COQ10, Milk Thistle, Vit B12 and Methyl Folate. I was given Azilect by my doctor and took it for 2 weeks but stopped 5 days ago because it was making me feel worse and I had a vacation planned. Is it okay to take Mucuna Pruriens along with Azilect? I bought some MP and EGCG but have been afraid to try it yet. I really need something to help me feel better.

Thanks for any help!

23 Replies

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  • Which supplements should I start with?

    allithiamin

    excerpt: Raising thiamine levels with intramuscular injections may be a good beginning, but you still want to keep from becoming deficient. I did this by following the course of injections with an oral form of thiamine.

    The two kinds of oral thiamine available on the Internet are benfotiamine and allithiamine. They are not equally effective. While thiamine levels increase rapidly in the blood and liver an hour or two after ingestion of benfotiamine, they don't affect the brain. For tremors, allithiamine is the best form of oral thiamine to take. After increasing my thiamine levels with injections twice a week for two months, I took 100 mg of oral allithiamine twice a day to keep my levels boosted. I found that this was sufficient to keep my tremors at bay most of the time--with one exception. Stress caused the tremors to begin again. Studies have shown that stress factors (dietary, viral infections, or even a sudden exposure to cold air) can trigger a thiamine deficiency response.

    Several months have passed and I'm still tremor-free. I continue to take oral thiamine and watch my stress. My doctors and friends are amazed, but I'm not. I always believed I would find an answer to my tremors, and I'm not surprised that the solution would be nutritional. After all, I've been the Nutrition Detective for more than 30 years. - Nan Kathryn Fuchs, PhD

    thefreelibrary.com/What+if+...

  • I have been taking biovia B1 vitamin with magnesium for about 22 days. I feel like I am feeling better however my Tremor is worse. Since you had the injections were you able to find B1 with no aluminum in it? Thanks for the answer Mary

  • My husband has also been taking Biovea B1 with magnesium for about 22 days. We were so hoping it would help his tremor but if anything they may have even become marginally worse.

    What is the best allithiamine product to take RoyProp

  • Ecological Formulas Allithiamine Vitamin B1 Capsule, 50 mg, 250 Count

    Not an endorsement, but the only allithiamine I am aware of.

    ncbi.nlm.nih.gov/pubmed/978282

    "...

    Oral administration of lipid-soluble allithiamines [thiamine propyl disulfide (TPD) and thiamine tetrahydrofurfuryl disulfide (TTHF)] rapidly increased thiamine activity in whole blood, red blood cells, cerebrospinal fluid, and urine in normal and thiamine-deficient subjects. These thiamine congeners also restored red blood cell transketolase to normal in alcoholics with thiamine deficiency. Such repletion equaled that produced by parenteral, water-soluble thiamine hydrochloride (THCl) or thiamine pyrophosphate (TPP). Oral administration of water-soluble thiamines (THCl, TPP) neither elevated thiamine activity in biological fluids nor restored transketolase activity to normal in alcoholics with thiamine deficiency presumably due to their rate-limited intestinal transport. Oral administration of TPD eliminated lateral rectus palsy in patients with Wernicke's encephalopathy. Orally administered allithiamine vitamers are therefore recommended for prophylaxis and treatment of thiamine deficits because while having essentially the same biological properties as parenterally administered water-soluble thiamines they have not produced any untoward effects after long-term administration and are far more efficiently utilized."

  • Thank you for that input RoyProp.

  • Welcome to the club Carol !

    I can only tell you my choices. For each I have some rationale, usually based on various PubMed papers :

    - I strictly follow the Mannitol procedure as advised on the CliniCrowd site. I tweaked it a bit recently though.

    - I take N-Acetyl Cysteine (3 x 600 mg per day, far from the meals),

    - Some magnesium and B6 (to counter the supposed negative effects of Benserazide).

    - I intend to add Curcumin ( 5g/day ), Ceylon Cinnamon ( 3g/day ), Omega 3's (EPA, DHA). The proper doses are very hard to find. I followed the rule of the thumb and chose to plan for half of the maximum advised here and there on the Internet.

    - I am already doing intermittent fasting by eating only from 12AM to 8PM, which I intend to tighten to 2:5 fasting.

  • Hi

    I take mucuna NAC , Citicoline and folinic acid my tremor is much better of late

    No meds as yet diagnosed 18 months symtoms 4 years

    I keep active

  • I don't want to complicate things even more for you, but there are certain facts you need to know;

    1. No medication on the market has yet to be proven to have any effect whatsoever on the progression of Pd. Therefore, you will continue to get worse as the years slip by.

    2.

  • I don't want to complicate things even more for you, but there are certain facts you need to know;

    1. No medication on the market has yet to be proven to have any effect whatsoever on the progression of Pd. Therefore, you will continue to get worse as the years slip by.

    2. Exercise has been shown to have some effect on the progression of Pd.

    3.

  • This is the 3rd attempt to send a response to your question. I hope it gets past Q 3.

    I don't want to complicate things even more for you, but there are certain facts you need to know;

    1. No medication on the market has yet to be proven to have any effect whatsoever on the progression of Pd. Therefore, you will continue to get worse as the years slip by.

    2. Exercise has been shown to have some effect on the progression of Pd.

    3. If you want to read further then look at my profile and see how I managed to reverse some of my symptoms and come off all Pd medication since 2002. I am now 82 and am living a normal life.

  • Hi one thing to consider is don't take lots of things at the same time or you won't be able to tell which supplement worked. Here is my advice that is pretty simple ...start daily exercise and daily meditation , use a foam roller to relieve muscle tension, if you have any balance issues look into getting a balance board or bosu ball type piece of equipment. Lastly do your own research (to draw your own conclusion on this) into a daily nicotine patch; this starts at 3.5mg for 2 months. Loads on line re this such as clinical trials plus a doctor in France caller Dr Villers or something similar that uses Nicotine as a treatment where the dose is gradually increased over a long time. Hope this is useful for you. Thanks

  • How long since you were diagnosed Rhollywood

  • Hi somewhat of a unique experience...2 years ago aged 35 a chiropractor done a neck manipulation on me that caused a stroke. The brain damage caused all classic PD symptoms I'm under the PD consultant ongoing monitoring but no formal diagnosis they are waiting to see how things pan out its really more Parkinsonism in my case. I have since trained in sports massage so know a lot about releasing muscle tension which is one of my symptoms. If you click into a post I done a week ago you should see few points on foam rolling that you may find interesting. Thanks

  • Omg that's terrible - suppose there's no recourse with the chiropractor?!

    Just quickly been reading your earlier posts about wobble boards and foam rollers for neck tension - I sometimes get very back neck tension but I'm not the one with Parkinson's, my husband is.

    I'm going away for a few days and don't have much time right now so will look into this more thoroughly when I'm back. It all sounds very interesting.

    The reason I asked how long you'd been diagnosed is because at 63 years old and having being diagnosed for 12 years I really don't think my husband would be able to balance on a wobble board at all.

    I'm very keen to see your website when you get it up and running - please post details here on Health Unlocked.

    Thanks.

  • Rhollywood,

    The discoverer of the nicotine patches for Parkinson's is Dr Gabriel Villafane. The protocol is rather complicated, and he is not allowed anymore to prescribe it from hospital Henri Mondor, near Paris, where he works in the Neurology Unit.

    I do not know why.

    But I am quite amazed by the number of people that are satisfied to say the least, by this treatment. They even asked the french Parliament to intervene...

    I have a close friend who will begin it in June.

  • Hi yes sorry I didn't have time to double check his name; I done a lot of reading on line many months ago I can't recall now but there is a blog / group where users commented. It was all in French so I done a Google translate. I worked up from 3.5mg for 2 months then 7mg for 2 months then 10.5mg for 2 months then got lazy so had a break and recently started again it 100% makes me feel better so I think there is something in it although could be a placebo effect. One thing I recall was to not take vit B1 due to a reaction with the nicotine but can't remember the full details as it was a while ago. Thanks

  • That's right... ignore your doctor with years of medical training and experience and go with "natural" that is neither clinically tested or regulated to ensure dosage and quality.

    Be smart. Talk to your neurologist. If one medicine is not working or causing side effects then there are others. Go ahead and talk to your doctor about supplements as well. They may be helpful, but the wrong supplement can affect your medications or just make you worse. You are right to be cautious about medicines but be more cautious about supplements.

    Getting a second opinion from another neurologist is a good idea.

    Ignoring medical advice is risky. Many of the medicines are derived from natural sources but tested and regulated to ensure your safety.

  • Who are you asking? I'm not a stalker...

  • I'm a retired United States Marine with PD, not medical, and the idea that you are more informed than a doctor of neurology is wacky. You do not have medical school. You do not have many years time with numerous patients with PD. Your natural remedies are not tested by clinical trials or manufactured in a controlled environment. In short, you are making uninformed recommendations to vulnerable people desperate for help who should be looking to medical professionals and not people growing dandelion weeds in their back yards. I trust my doctors. I listen to them. I question them as appropriate and know that the answers I get back are based on science, not fairly land magic. If you want to do that to yourself, great, but causing harm to someone else with your medically unsupported suggestions based on schizophrenic paranoid conspiracy theories should make you feel guilty and not able to sleep at night.

  • I get the anxiety of being newly diagnosed. Been there Carol. What more can you share about your symptoms that the doctor and you have discussed in coming to a diagnosis of PD? What other Rx has your doctor prescribed (other than Azilect). I get why you would want to go as natural as possible, I do too. But I went totally natural for 3 months then took a step back to using my tabs of sinemet during times away from home. The all natural way means carting around a lot of stuff, and bulging pockets are unattractive. :) Somethings to consider are, natural products marketed aren't all what they advertise to be. There are bad products on the shelves. Judge the benefit of what you ingest as objectively as you can. If it hurts, don't do it again. When adjusting a component of your natural regimen or adding a new one, always change one thing at a time and do that for as long as it takes to make a good judgement of whether that change was a benefit or a negative. Study the posts by Silvestrov, he is a great resource for research links. Remember, we do not have identical bodies. Some PWP are effected in different ways by natural substances. Every one has different tastes in food, right? Same thing. I see you are following Becky also, good choice. Why not fill out your bio that will help others to communicate, knowing more about yoour circumstance. Stay feisty! People with Parkinson's need to know how to speak up for ourselves and stay here as a member of this bulletin board community, so you can always herein find support and never feel like you are alone.

  • Thank you for the thoughtful reply, Buzz! It was my first post and I almost deleted it due to the negativity it provoked.

    I don’t appear to be tremor dominant My most troublesome symptoms are Bradykinesia ( I feel like I am slowly and jerkily moving through a thick fog) and anxiety which seems worse as I try to move. I have had a stiff hand for several years but attributed it to a diagnosis of ulnar nerve compression awhile back. Internal tremors (which nobody else could see) and the slow movement prompted me to see a Neurologist and so here I am. I am small and very sensitive to medication and have just started to adjust to the Azilect .5 mg. I don’t know how in the world I am going to tolerate any other meds. My Doctor mentioned starting me on a Neupro patch first, but the agonists and their side effects really scare me. I work full time, live alone and up to the last several months have been very independent and active.

    I have read the posts by Silvestrov and yours as well since you have tried the Mucuna. I have also looked into the Hinz protocol, but haven’t decided if it will be worth the cost. I am very analytical and have spent so much time online, reading everything I can find that I am overwhelmed.

  • I did not know of the negativity. I just started typing when I saw that you had followed me, I think. I have not read the other replies. A shame the way some of the bulletin board get on a tangent or multiple tangents on a post put up by somebody, like yourself, that is a newbie. You will undoubtedly pickup on the characters that are clowning around, Note, I can write both in jest and in seriousness depending on who I am replying to. This board is easy to use as a sounding board for ideas you might get about trying things. One just has to identify the b.s. Try things for sure because as you already know the only way to know if you are able to help yourself is to sample, sample, sample what's available for people like us. I wanted to say I am glad your neuro has started you on the .5 Azilect as you are a small lady. They say Azilect has the ability to slow down the advance of our cursed disease. By the way, some scientist wrote the same about ubiquinol taken with each meal. I think that was in Silvestrov's documentary. Be sure and take some vitamin C for the anti-oxidant properties. If you start trying to add mucuna pruriens, study how to take it. Silvestrov's method of using green tea extract EGCB works if you take fish oil and some vit C along with the EGCB then wait a short time for that to begin to get into the blood before taking the mucuna pruriens. The right dose of mucuna pruriens will depend on several factors, your size, your brain's levodopa deficiency, whether or not you are between meals, how much protein you have consumed. Really not straightforward, lots of ways to get the most out of it and things to avoid and/or at least not take at the same time as a mucuna pruriens dose. One thing for example, avoid taking B 6 at the same time as dosing with mucuna pruriens, B 6 which we need, ironically impedes the levodopa from getting where it needs to go, if I understood what I read. I could be wrong, I'm not a scientist. Thanks for liking my reply. Eat fresh foods, avoid heavy proteins, especially if full of preservatives (processed/cured meat-YUCK!), if you can. I hope you have a nice vacation.

    P.S. If you do not already, try drinking a half a cup of fresh, strong black coffee. Not the stuff in those little paper bean bags, real fresh ground coffee that you brew yourself like in a french press so you know it only contains coffee. Coffee helps some people that do not have tremor, like yourself, to defeat the bradykinesia. For anxiety, I use controlled breathing, you know in through the nose out through pursed lips and follow with a shoulder shrug and repeat until the anxiety eases. For the rigid cog-wheeling joints try eating a hot pepper, the organics in those things can do things to a person beyond just setting your mouth on fire. But don't hurt yourself with one that sets your mouth on fire, please.

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