I have been taking 3g of B1 daily for the past 2+ years. I have never taken a break from this, other than for a couple of days. I am into my sixth year of PD, and I don’t take any meds.
Recently, I became aware that it is recommended to take a break from HDT for 2 to 4 weeks, periodically. Upon restarting, vary the dose to see what works best.
I am on day four of not taking B1 and noticing that my overall symptoms are getting worse. Safe to say, these are the worst symptoms I have experienced to date. My question is, should I stay the course and wait 2 to 4 weeks before restarting, dealing with the symptoms as best I can? Or resume my 3g daily of B1 as soon as possible?
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If you feel 4 days is enough to know and if the claimed benefit or the 2 - 4 week break is to see if it makes the therapy more effective, why change the thing that is already effective? Were it me, I'd resume.
I have been on B1 for about 4 yrs and take breaks pretty much only when it isn't working. Then I have to go through the arduous process of figuring out whether to titrate up, or down ! I learned that breaking for no reason can really 'upset the apple cart'. I think breaking 1 day a week is safe though.
Of all the supplements I have tried, B1 seems to have been most reliable. Without it I really don't think I'd be mobile. It has been difficult keeping at the right dose though, and recognizing the signs of when to reduce, or add.
Thank you for giving this update on your usage of B1!
Dr. C. previously mentioned that his patients who inject B1 in Italy could take lengthy breaks with no issues, but it does not seem to be quite the same for people on oral B1. If your symptoms are worsening after a 4 day vacation, I would be inclined to restart. On the positive side of your B1 vacation, you now have a better idea of what exactly B1 is doing for you. If you feel inclined, could you share exactly what you feel the difference is between, with B1 and without B1 in regards to your symptoms?
Out of curiosity, how did you arrive at the 3 gram dose as your optimal dose?
Based on what I’ve heard here, I’ve already restarted my 3 g per day. Since taking this relatively short break, my balance has gotten significantly worse, my body has experienced overall more stiffness, walking has declined, and fatigue has increased. Pretty good reasons to restart the protocol.
When I originally started B1, I started at 4 g per day. That was my understanding for the upper limit. Actually, I think for the first day, I started taking 1g/day, just to see how my body would respond. I quickly increased the dosage day after day, looking for any negative signs, and after experiencing none, went to the maximum 4 g per day. After a month or so, I settled at 3 g. Of course, I have had no professional guidance in this matter, so I really don’t know if I am achieving the best results. But considering that I have had no significant tremor anywhere in my body, and I walk fairly well, and I take no meds, I guess the protocol has been working fairly well for me.
About one month ago, my PD symptoms expanded to include drooling and a small tremor in my lips. Perhaps this is just normal progression, but it was enough for me to investigate changes to my B1 dosage.
Thank you for the information on how B1 affects your symptoms!Will you maintain the 3 grams or adjust upward or downward? Do you do the pull test regularly to try and optimize your dose?
Dr. Costantini used the pull test to try and optimize the B1 dose for each individual. He was looking for maximal symptom relief in conjunction with a good pull test which he considered to be a very good indication that you had reached your optimal dose. Here is a link to an HDT FAQ page that I created while Dr. C was still here to answer all of the common questions I submitted to him to eventually form this FAQ page . Look at question and answer #35. The very short video shows Dr. C performing the "Pull Test" on one of his patient's. This patient shows a very poor response. A good response equals quickly regaining your balance in a half step backwards or less.
I seem to remember having read Costantini saying that those breaks are not required but are just meant to give his patients the comfort of knowing that they can stop for a while if they want to. Also I seem to remember him saying that B1 remains effective for a few weeks even when interrupting treatment (3 or 4 weeks I think).
I have personally been taking 2.5g B1 for 2 years without breaks.
A lady called Daphne Bryan recently published a book about on B1 (on Amazon). She might be covering your question.
IMO. the break from b1 can rebalance the body and be beneficial, for this it can be enough 5 to 10 days,Max, later you may have a little weakness in the legs and body, after three weeks it will be evident if you connect it to the break of B1.
I’ve just had a book “Parkinson’s and the B1 Therapy” published. hyperurl.co/B1Therapy
I cover a lot of things you may find interesting. Basically if you find yourself saying ‘my symptoms seem to be getting worse, I guess it’s natural PD progression’ it might not be PD progression but could be time for a B1 break and possibly a reduction in B1 dosage. 3g is quite high, taking the average of what people find effective. If the dose is too high it will produce worsening PD symptoms. So if you feel the worsening symptoms started before the break, then the break is needed. Usually when you have a break, all the improvements stay and you just feel fatigue return when it’s time to end the break. It never does harm to take a break but if all is going perfectly with no diminishing of benefits or increase of symptoms, then I would not break for the sake of it.
I am 68 years old and into my sixth year after noticing my first PD symptoms. I was quite surprised I got PD, because I had been taking very good care of my body for the past 50 years.
Early on, with the help of a naturopath, I got tested for heavy metals. It was confirmed that I had very high levels of mercury and lead (both originating in my childhood). It took me more than one year, using a supervised DMSA treatment, to get these levels down to acceptable limits. But physical damage had already been done to my brain from exposure to these metals over more than 50 years. I think this was the primary cause of my PD.
A few years ago, I got tested for food sensitivity, as I noticed that some of my PD symptoms were affected by what I ate. I was very surprised to discover that I was sensitive to many basic foods I was eating, like eggs, peas, sweet potatoes, almonds and a few others. They were causing inflammation. As I eliminated these, I started feeling better. In particular, my sleep got better. I am still experimenting on changing my diet, which is now largely keto.
One big piece of the puzzle for me was when I started using the Vielight device (their top of the line model). It had an immediate effect on several of my PD symptoms. Better walking, better balance, less brain fog, less fatigue… I use this device almost every day.
I can’t be sure what effect various supplements are having, but I have been taking 10,000 iu of vitamin D3 and 2000 mg of liposomal vitamin C (which is roughly equivalent to 8000 mg of regular vitamin C) every day for several years. I have tried many other supplements. I have also been taking C-60 every day for the past several years, and I think this is helping, as it is a powerful anti-inflammatory.
I have tried mucuna for several weeks on two occasions. I didn’t experience any positive effects.
Of course, the B1/HDT has been at the core of my treatment process.
I take the same supplements. I feel it’s a guessing game with the amount of C-60, so I take around 5ml, a day. How much C-60 do you or others take? Thanks
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