i was diagnosed 4 months ago (I'm a 63 years old female). I have mild symptoms (some rigidity, tremor, slowness, cramped handwriting). My neuro recommended to take Azilect which I have not started (yet)., and frankly, I see no special benefit in taking it I would like to postpone medicines as long as possible. Since dr. Costatini is currently unavailable, I am a bit lost as to the dosage. I am slim and tall, and do not take any medicines on a regular basis. Any suggestions about how much to take initially? I would also ask you if I should take anything else along with B1 - maybe magnesium, glutathione, mucuna (I often see these recommendations on this forum) or would B1 be enough at this stage?
Thank you so much for any suggestion you may give me
Greetings from Slovenia
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narcisa56
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The positives: no bradykinesia, I cut my food with a knife, no button difficulties, brush my teeth now w/o needing elect brush, more strength. Getting in and out of bed, turning over is easier. No more constipation. Parkinson's progression stopped. Suppressed all motor and non-motor symptoms...
Entering my 7th year post diagnosis and have not fallen, not once, to the surprise of my neuro. Was seeing neuro every 6th month, last visit he set app one year. He said if needed we could do some changes earlier. He said my condition can change in as little time as one week.
New schedule, now I follow this regimen:
2 x day C/L 50-200 ER : 8 am, 5 pm. Because it is ER, I take with or w/o food.
2 x day (8 am 2g, and 5 pm 2g) Vitacost vitamin B1 (as thiamine HCL) 500mg, easy swallow capsules
B1 Thiamine therapy reference / stop progression, suppress motor and non-motor symptoms:
(Thiamine HCL is oral substitute to injecting B1) 2 x day (morning 2g and at lunch 2g)
Doctor Costantini strategy that I find helpful "thiamine hcl stops the progression forever...".
Parky people say the first five years is your honeymoon stage with Parkinson's. After that, progression more rapid.
I have gone from slow motion to normal motor action since joining the growing number of PwP that have started B1 regimen/protocol. –
Doctor Costantini - “Why is this? Because there is no medicine or drug that is able to affect all of the organs, whereas all of the organs function thanks to Thiamine. An important detail”, adds doctor Costantini, “the Thiamine therapy brings no collateral damage with time”.
Hello Roy, Would you advice taking Vit D3 along with B1 high dose? My husband stopped his D3 a few months ago when starting B1, thinking he had read somewhere not to combine the two. Now we are wondering if we have made a mistake since we have been reading a lot of people with PD take high doses of D3. Do you take D3 along with your B1? We sure need help on this answer. I'd hate to wee my husband not take his D3 if he is supposed to be taking it along with B1. Thank you so much.
Thanks Roy. Do you not take with B1 because you know/read/heard it shouldn't be taken with B1? Just wondering. Do you know if it's safe to take with B1? Is it just your preference not to? Thank you again in advance.
Thank you. Guess we will hold off on d3 Just didn’t know if we should hold off d3 if my husband’s levels are low. We couldn’t find where my husband had initially read no d3..., must have been somewhere in a Dr constanti post but we haven’t been able to find again. Still working on finding right b1 level. Thank you, Roy.
Iam not familiar with acronym like C/L I suppose it is levodopa,? Diagnosed in the summer of 2017 I take the classical treatment Modopar + Azilect .+physical exercise (walking and cycling indoors) . Slow evolution ,however :diffficulty in using my left hand become weak, standing up.and slowness in moving . I have recently bought Thiamine B1 in capsules of 100 mg and I take 3x a day . According to what I read on this forum it's not enough but it seems an unresolved issue (the dosage) . Although my neurologist doesen't believe in vitamin B1 I will continue to take B1 as a supplement I would welcome a positive experience of somebody having notiiced a clear improvement after taking B1 for a long period (I mean a few weeks or months). Thank you and forgiive my mistakes in English that I have not practiced for years
Anyone who has questions about Thiamine (also called "vitamin B1") can try to find answers by typing this in the address bar, (look at the end of post for the link).
HU has provided a database on thiamine, but also other substances, with subsections such as "Questions" and "Side Effects". I understand that getting answers from Roy or others is much more interesting and alive than reading an entire database, but I think that even for Roy it is a bit "too much" to answer countless times the same questions as I have always seen him do, very willingly, in the name of help and sense of duty.
I also understand the great need for people to get answers to a disease as devastating as PD which is still not taken care of.
I've been taking B1 for 4 years and dark, hopeless days have ended since then. It means that I am healed ? no!...given the injurious character of this disease. It means more health, that it is more time, that it is more hope, and at 56 it is fundamental for living, even without PD.
SO...A special thanks to Roy for years on HU, but also to all the other veterans of this forum who provide answers and hope to all.
Here a society with an order that we could call "The people who take care to the people". This could be an example for every field of civil society.
I was like you when diagnosed almost five years ago and similar age. I was against taking medication and resisted for two years although I did take Azilect which gave me no side effects whatsoever. No medication can stop PD progression. Azilect might but research is inconclusive. Exercise absolutely will slow progression! I also started supplements recommended on this site.
I finally went on carbidopa levodopa after two years and struggling through an exercise program and the improvement was amazing. Started B1 a year later and have little or no progression since initial diagnosis. I did retire and generally rest in the afternoon after exercise every morning if possible.
Dr. C recommended B1 hcl to be used with C/L. Mucuna provides dopamine but I’m not familiar with dosages so wouldn’t be of help. You should do very well since you don’t have other chronic conditions.
I know that Dr. Costantini recommends levodopa but I have never seen any evidence that using levodopa is necessary to benefit from vitamin B1. Personally I would go ahead and start B1.
This is what I would like to try, yes. So there is no need for example for simultaneous mucuna (maybe later as a replacement for levodopa?) or glutathione?
One part of me is probably still in denial, and the other is horrified at the prospect of introducing such devastating substances into my body which is quite healthy (if we put Parkinson's aside ) But probably I will have to come to terms with the truth............Am I exaggerating?
I believe non of us knows what’s round the corner, and if we can do something to make our lives as good as possible then do it , quality of life is very important.
Why postpone medication as long as possible? The jury is out on whether Azilect slows progression but it may, exercise will and if taking medication helps you exercise then perhaps you should think about taking it ? My husband was diagnosed in 2006 started on Azilect, then Stelevo and Madapor dispersible as a rescue remedy if he stops . He runs, plays golf, goes to the gym 5 times a week ( Pilates/ HIT) he is very fit but has only been able to maintain his level of fitness by taking medication and eating well .
I’m not sure if the B1 alone is helpful but it can’t hurt. If you aren’t ready for levodopa medication try to get dopamine naturally via exercise, music, being in nature, spending time with family and friends. You will know when medication is necessary when fatigue makes it hard to exercise or if you have worse tremors, apathy, more constricted movement, or one or more of the many symptoms of PD.
I would like to try B1 I hope there will be some signs of improvement or at least no worsening of symptoms, at least for a while.
Thanks for your kind words on how to increase dopamine - I now realize that I have been miserable /sad for years ! Is it the cause or consequence of Parkinson's, who knows.....
If I understand well, there is no way of avoiding levodopa eventually.........
People including a lot of doctors used to believe that it was best to postpone taking c/l as long as possible due to the eventual side effects. From what I understand, there is some level of consensus now that delaying does not provide a benefit, that it’s the combination of dose and disease progression that generally brings on side effects such as dyskinesia.
In other words, the small dose you would start with is unlikely to give you side effects. If you wait a couple more years, your dose will be the same at that time as if you begin with low dose now. That small dose will help you with exercise, which is essential, and in general you will likely feel better. If you are among those who get unpleasant side effects off the bat, you can discontinue without problems.
I waited three years from diagnosis to start c/l. I started rasagiline (azilect) at the beginning. I tried mucuna and it helped a bit. Last fall, I started c/l before going on vacation, to see what would happen and hopefully make my vacation more enjoyable. It resolved all of my symptoms almost immediately, including depression and anxiety. My movement symptoms were still quite mild but it has made a huge difference in my ability to live my life more fully both emotionally and physically. Absolutely no regrets.
So my experience says not to be afraid of the meds, if they improve your quality of life AND you aren’t one of those who has side effects. Would you feel this way about taking insulin if you were diabetic?
As far as supplements, I take CoQ10, EPA/DHA, glutathione, vitamin D, and magnesium among others, but those are I think the most useful. B1 didn’t work for me, gave me hip and lower back pain.
Mucuna didn’t help much. I might have needed a higher dose. Both my neurologist and Laurie Mischley (a naturopath in Seattle who works only with PD patients) encouraged me to try c/l. Laurie said none of her patients who have gone from mucuna to c/l have looked back. I figured I had nothing to lose, I could always switch back. But the result was so good and I was very happy with it!
As for exercise, I alternate going to the gym with hiking. When I started, I was not in very good shape, i’ve never been an regular exerciser. Ideally you want to work up to getting min 30 minutes of moderate to high intensity exercise most days. You need to get your heart rate up, sweat. And combine that with some stretching and strength training. But you should choose whatever kind of exercise you can sustain. Some people swear by biking (stationary or not), fast walking, running. Personally I think that it can all be good, as long as you’re breathing hard and sweating.
There is some research that shows raising your heart rate to 80% of maximum for 30 minutes 3 or 4 times a week can significantly slow or stop progression. That’s a high bar, but you can set it as a goal and work towards it. I’m at about 75% of maximum after quite a while, but I figure that’s pretty good for someone who’s never been athletic.
I read that a well known movement disorders specialist said that he wished all his patients would become athletes!
Oh yes, some people also swear by yoga. There’s a local yoga teacher where I live with PD, who is still teaching internationally after 12 years and looks quite well!
I have been taking B1 with no drugs for over 1 year. However, I do take several other vitamins and supplements, which are listed on my profile page. I don't intend to take medication unless or until the disease affects my daily life. Thankfully, it hasn't so far. I began taking 3 grams of B1 per day and eventually reduced it to 1.5 grams. Good luck!
Thanks for the info and the optimism! (I really need it...........) I have a similar mindset. I hope it works for as long as possible. We'll see....Now I have to start figuring out the B1 dosage.
My toes curl when I exercise intensely, which didn't happen a year ago. On the upside, my sense of smell has improved, my energy levels are higher, my gait is better and I just feel better overall. The "feeling better overall" might be due to less anxiety about the progression. I should also note that Dr. Costantini told me I did NOT need to start medication just because I started B1. Good luck!
Just received the copy of your communication with Dr C - invaluable, I really appreciate your kindness. I was too late to be able to contact him, unfortunately...
Did he also advise the other supplements you are taking?
No, but I am being seen by a chiropractor who has great interest and experience with neurodegenerative diseases. He's very athletic and stresses exercise as much as vitamins and supplements. Both he and I have researched everything I do or take.
Jim is an inspiration. I believe if taking B1 and all the supplements can stop the progression (including exercise) go for it. My husband takes B1 hcl, ubiquinol ( healthy origins) 300 mg, NADH 10 mg which includes 200 mg riboside) magnesium 2 capsules (natural slacks) probiotic (clostridium butyricum by miyarisan) melatonin 2 mg. we started with just B1 for 4 months to get the right dose before adding the rest. Recently added vitamin D3 n MK7. Also using fountain of life antioxidant 3x a day. Just ordered Restore Gold
No deterioration. There’s improvement but when the B1 dose is too high there’s worsening of symptoms. We started in Feb n now only reaching optimum dose of 450 mg a week. He takes 50 mg daily but 100 mg on tues n fri. He now wakes up 3x a night to pee but sometimes for unknown reasons he is back to his 5-6 x a night
450 mg sounds a very low dose..........I was taking a B vitamin complex containing 100 mg of thiamine (1 tablet a day) this spring but noticed no effect. Obviously I am going to need a higher dose.
We started on 500 mg n after 2 weeks increased to 750 mg and after a week to 1 g. On 1 g he was excessively fatigued, started drooling ( which he nvr did before) became more rigid and most tell tale sign active dreams. We stopped for 3 days then restarted at half the dose 500 mg . After 2 weeks started having active dreams. So had to go lower n slowly build up and so that’s how we got to the dose. There are a few people on this forum on low dose 100 mg
I try to avoid lots of carbs for him n red meat
Your B1 has to be hcl. All others except the sublingual type don’t work
I only added ubiquinol, NADH , D3 n mk7 probiotics when I was getting close to his optimum dose
I'm really grateful for being able to get info and encouragement from you, members of the HealthUnlocked community After the diagnosis I felt doomed and helpless, and thought there is no use trying anything as the disease will follow its course one way or another. Now I feel I can make a difference and got some hope back.
Hi, I was wondering - with such mild symptoms as yours, how did you even get diagnosed / seek medical advice? I have more, though mild, symptoms, and had a DATSCAN done, which confirmed the suspected disease........
Hi Narcisa! I was diagnosed 2.5 years ago but symptoms started earlier, maybe 4-5 years ago. First thing to do is to accept the situation and eliminate the stress as much as you can. In February 2018 my balance and other symptoms went bad (anxiety, depression, insomnia, constipation, tremor etc.). I was at the point to stop working (I'm software engineer). In March 2018 I started B1 HCL 2g a day (1g morning, 1g around 3pm). After a week I felt improvements and after a month all my non-motors symptoms were gone. The tremor was diminished but not resolved by the Thiamine.
To stop the tremor I accepted to start C/L 100/25 3x per day. It did not help. The doctor added amantadine 100 2xday. It did not help. He told me to go to 6x C/L a day. And this was just to remove a mild tremor. He added Azilect, too. I noticed all of these were making me dizzy and my brain was slow. So I got rid of amantadine and azilect and I reduced c/l to 2x a day. Also I reduced B1 HCL to 1g a day. I added D3 2000IU a day but from time to time I stop it to prevent calcium accumulations in the body. Few months ago I noticed a bump in my palm which went away after stopping D3 for 2 months. Now I take D3 less often as I prefer the sun.
To cut it short, at this time I feel very good - my brain is clear, my balance is perfect. I just have a small tremor in my RH, which sometimes stops and some slowness in the same hand. I'm still working even my age is close to yours. Yes, exercising , dancing and fast walking helps, too.
Sorry for having been off line for several weeks now. We are having a corona epidemic (we are one of the countries neighbouring Italy)and we are quite busy managing it (food and medicine supplies, safety equipment, quarantine......).
I received B1 injections (100 m weekly) for 3 months but it is no longer possible due to security measures (see above). Now I started to take 300 mg tablets which I fortunately still have. Looking back - the only change I noticed was no more constipation. Maybe the dose was not right for me. I will probably have to further try and adjust it.
The whole world is in a mess. My advice is to stock up on your essential meds as there maybe some disruption.
My husband is the one taking the vitamin B1 hci.
We started in Feb last year. It took quite awhile to get the right dose. You have to keep a journal and note the changes. He started with 500 mg, 2 weeks later increased to 750 mg then another 2 weeks 1 g. Everyone here was taking quite alot. After the deficit was filled we had to reduce the dose because he started to have active dreams. To cut the long story short he is now on 100 mg daily. The benefits are :-
1. Balance back to normal
2. Better driving- does not veer into other lanes
3. Face less frozen
4. Does not choke on his saliva
His sense of smell is still not back to normal.
He has not been diagnosed and he is not on any meds and takes only
B1. Getting the right dose is crucial and requires a lot of patience. Too little and not much improvement. Too much the symptoms worsen. At 1 g he was drooling- something he never did. It really frightened me. Keep working at the right dose because the benefits are life changing.
Take care in these uncertain times and God bless
Oh he also takes the Japanese probiotic Miyarisan which is clostridium butyricum- this is good for clearing alpha synuclein
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