Hi , I'm new to Parkinsons. I was diagnosed last year.Has anyone been successful with just treating PD naturally??
No
I am trying b1 but had to take a break because my symptoms got worse.
Are you sure B1 is to blame and not natural progression of PD?
I have been on Naltrexone 4.5 mg. for a year,I'm also taking fatty 15 which helps renew cells, b complex and magnesium.
Quite an exotic combo. I not encountered these items in 5 yrs, of Parkinson research. Do point me to some research papers.
I exercise faithfully.
This is good.
I have Dopa Boost I could take which is a natural supplement. I really feel I need it.Its hard to be patient.
Maybe you should take it. Start with one capsule per day and see if it helps. If you need to take two capsules spread them out over at least six hours.
Should I hold off while I'm experimenting with b1?
Maybe you should to get a clearer picture of where you are. When you restart do add Magnesium to the mix. B1 therapy does not work without Magnesium.
I’m also a newbie and looking to start Superior source B1 once it arrives. You indicate to get on magnesium prior to starting the B1. Do you have any more info on recommended dosage/type etc. I read the uk site that mentions Magnesium L’Threonate. Is this the right approach. Thanks
The best thing to do is to buy "Parkinsons and The B1 Therapy " on Amazon Dr. Constantini says 375mg. extended release should be taken 2 times per week.
I am personally on Pure Encapsulations Magnesium glycinate 240 mg per day.
I'm also new to this so will try to research to see what's most effective.
I’m just diagnosed and not yet on any treatment. (Although w was offered). I read up on Dr Constantini and by all accounts he was a remarkable human. Daphne’s book was also a great help in identifying my plan to try the B1 protocol and tune it to my needs. It seems to me there’s a lot of factors that will potentially affect each individuals response. Health, fitness,diet etc. Im hoping with the vast knowledge bank here that I will not make some needless mistakes hence the magnesium question. For me at the moment I’m focusing diet (not hard as. I was already eating healthy) Im very active at work. I will up the b complex and while I was ordering the b1 I also ordered some now dopa mucuna 15% to try. Any recommendations are welcome
I agree that there are alot of different factors and each individual is different. I found a b complex with the right b6 dosing. Thorne Basic b complex. It has 10 mg of b6
I'm also ordering John Peppers book and am following his advice to walk every other day for an hour.
I'm holding off on adding the dopa mucana until I see how the b6 works.
If you are using Superior Source B1, this is not actually a sublingual formulation, per the manufacturer and this is why Daphne suggests keeping it in your mouth so long. A true sublingual formulation does not require that you keep it in your mouth so long. This form of vitamin B1 that Superior source uses is called thiamine mononitrate. They use the term "Microlingual" which may give the impression that it is a sublingual formulation of B1, but it is not and that is why it takes a longer period of time to be more fully absorbed. Some forum members have found it more beneficial than thiamine hydrochloride and some have not.
Dr Costantini used thiamine hydrochloride, which generally speaking, requires a higher dose, but has been reported on this forum to require as little as 25 mg per day to achieve notable improvement of symptoms, but as high as 5500 mg/day in only one or two forum members. Some people seem to be more sensitive to B1 HCL than others.
I am not aware of a true sublingual B1 tablet, but your problem seems like you are getting too much B1 from what you are taking, so you probably don't need it. Try the dose reduction and see if that helps.
I bought Superior Source B1 - 100mg (they are on their way). In the meantime, I drink B1 tablets in a strength of 2g. I want to try the sublingual formulation, and I read on the forum that some take sublingual 1 a week. How to know how much to take sublingual dose? What can I expect? Thank you for your reply. All the best.
I believe 1/2 of a 100 mg tablet, 3 times per week MWFBe sure to take a break complex vitamin with low b6 of 10 mg or under. Magnesium is a must and potassium is also important. You have to be on Magnesium and b complex for 2 weeks before you start b1
Dr Constantini started his patients on magnesium after starting the B1. I know the current recommendation is first, but that is not what he did or wrote.
I mainly am familiar with thiamine hcl, whereas the Superior Source tablets are thiamine mononitrate (TM), but dosing is somewhat similar to hcl, albeit on a lesser dose level. I have tried both. Dosing at once a week is probably the exception and not the rule for TM. Dosing at two and three times a week would be more common. Some people require once a day dosing. Apparently how long you keep it in your mouth can make a significant difference in how much you absorb.
This is what I have written about Thiamine HCL dosing based on information that Dr. Costantini left with this forum and you can compare this to TM dosing :
Forum member Daphne is the person who you need to talk to regarding TM. She has a Facebook page with information on it and she will answer your questions when you ask her.
Hi Art what we are finding is that most B1 taken sublingually behaves sublingually! Yes one man puts very small dose oral hcl B1 capsules under his tongue!
The SL from Superior Source is very cheap and somewhat easy, but it was half the reason my husband stopped for several months. Parkinson’s effected his swallowing. It was not always volitional, so frequently we didn’t know he had taken. We also made the huge mistake of thinking one very bad day was overdose symptoms.
So we switched to oral. So we know what he takes. He is responding again. He can open his mouth all the way again and his voice is better. So it is going to be HCL for us. We started this time with the mononitrate gummies, but will switch to cheaper formulation soon. We started with gummies because compliance is important too and he likes them but it costs a fortune.
he started at 1000mg in AM and 1000mg at noon. It has been three weeks. Today we will add magnesium and b vitamins. He does respond to thiamine but we made some mistakes the first time around.
I agree, Daphne! You and I have had this discussion before . The HCL form is very bitter for this purpose whereas the Superior Source mononitrate form is much more tolerable not being very bitter at all. I know that it works for this purpose, but I just have an issue that I feel Superior Source specifically decided to use the term "Microlingual" to imply that they had specifically made a sublingual formulation when they knew that B1 could be absorbed sublingually at a lesser rate than an actual sublingual formulation. Why else would they have made up the term microlingual to describe their product and then got a registered trademark for that word?
We're all different. I was diagnosed in 2013 at age 55. I have no tremor (except my tongue when I stick it out!) and have managed well with natural approaches to symptom management. I'm not on any prescription meds so I have a pretty clear picture of my symptoms without the confusion of med side effects. The disease has progressed significantly, but slowly. I cope with slowness, posture, balance, falls and dozens of NMS.
I wonder if slow progression is due to 40 years of a healthy vegan diet, intentional exercise, lack of stress because Jesus is walking this path with me, or maybe supplements? The one that has the most notable effect is glutathione (or NAC - I've used either one or the other for 10 years.)
I appreciate HU as it reveals the courage and fortitude y'all have facing this disease. - Never give up!
Great reply! Yes, I'm also a Christian and find that God gives me the most peace I can find anywhere!We sound similar. I've been exercising and eating right for years.
I've used Jarrow and NOW glutathione, 500mg (or 600mg sometimes?) 1 per day. I was in Laurie Mischley's 2015 study on intranasal glutathione - 200 mg 3x/day - snorting a mist up my nose! It was helpful to me.
Glutathione doesn't cross the blood brain barrier (NAC will send the building blocks through and then the brain side can fabricate) but Mischley's CAM study (on complementary and alternative medicine) indicates people find benefit with glutathione! (Laurie contends that NAC is an excito-toxin and should be avoided. I haven't noticed issues when taking it, it's much cheaper...I quit using it in deference to her opinion.) When I don't take it (gluta. or NAC) for a week I get slower and stiffer and symptoms are more prominent. Laurie says her study finds no difference in brand of glutathione and recommends "the cheapest" (usually Jarrow). I buy from vitacost - (free shipping in US and only $10 to ship to me in Thailand!)
while continuing on what is working for you , you might want to read Howard Shifke’s book, Fighting Parkinson’s and Winning.” Also, Dr Janice Hadlock’s book , “Stuck on Pause.” They have both healed
My first ever post here… If I were you, I would not start on any meds or supplements (other than Magnesium) – natural or otherwise - and focus on metabolic strategies. @michel0220 interview of Dr Matthew Phillips is a good starting point - youtube.com/watch?v=iBNNIID.... Dr. Phillips has conducted world’s first RCT on Metabolic Strategies for PD and AD. YouTube has a few other interviews/presentations of him that you might find helpful.
Check out Upledger-based (original) craniosacral therapy.... I posted an amazing PD case study on this recently.
Also I just stumbled across the Medical Medium's take on Parkinson's. there' some relatively easy stuff to incorporate here - I know the Heavy Metal Detox Smoothie is delicious!
He is big on giving up eggs which is a bore, but if he's right about them feeding Lymes and viruses, then I suppose it's worth it (grumble)
I know this is primarily about b-1 but I saw a question about glutathione here. I am also wondering if anyone is taking glutathione here. I would like to start that but I am unsure about the dosages and brands that you all recommend. Any help with this would be appreciated. Thanks.
To the best of my knowledge there is no medication that does anything positive for PD.
I have lived succefully with PD since 1992 and now, at the age of 89, I am still fully mobile and enjoying my life.
What did I do?
I started doing FAST WALKING, not strolling but walking flat-out, for a maximum of one hour, every second day.
After two years of that my condition had returned to NORMAL. Since then I have lived a normal life, providing that I continue to walk every second day. I know it sounds boring but my health is as good as anybody xould possibly expect at my age.
Hi Hope. I am an old codger who does not know what MWF means, for which I must apologize. Every second day is important, giving your muscles time to recover, assuming you are putting everything into the walking. Good luck and have confidence that it really does work, for everybody!
Personally, I would hold off on other things whilst trying the B1. They may confuse the
situation. If you can, do try the B1 by injection. This avoids all the potential digestive hurdles.
Start with 100ml of B1 shots in your bottom twice a week for say a month. Then up the dose to 150ml for a month and finally 200ml. This is recommended final dose for the injection method.
The protocol above is my recommended course. Costentino says to go for 100ml for three weeks then up the dose to 200ml. I had problems when increasing to 200ml so quickly. I think it better to go ultra slowly.
You mention patience. You won't need much! I felt much, much better after three days on the initial dose. This almost immediate improvement in your symptoms will give you all the strength you need to patiently continue going slowly.
But do all you can to get the jabs. Costentino used this method to get his 2,700 successful treatments. He knew what he was doing.
I do not take any parkinson prescriptions, but instead grow fava beans and make extract of the fava pods. It has been a journey, but at 70 , I am able to do things that I couldn't do as a teenager with PD symptoms. I pray you will be guided with how to deal with this and get better.
I have been taking it for 7 months. My mood, walking and energy has improved but I am taking other supplements. Each person is individual. There is alot of Science based data coming out on Fatty 15. The longer you take it the more you are supposed to see results. I don't have any hard evidence myself but there are a few supplements I'm sticking with and some I will drop. Because of the potential benefits I'm going to stick with this for a while.
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For me at the moment I’m focusing diet (not hard as. I was already eating healthy) Im very active at work. I will up the b complex and while I was ordering the b1 I also ordered some now dopa mucuna 15% to try. Any recommendations are welcome 
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