I have never had a resting tremor, but I do have a slight intentional tremor insofar as my right index finger or thumb sometimes twitch as I attempt to change stations on my car radio, shave, or touch the keypad on my car or garage door. I have noticed that the twitch is almost non-existent when I only take 1 gram of Thiamine HCL per day, but my arm swing and general rigidity is slightly better if I take 1.5 grams. As Art used to say, the good news is that I definitely respond to thiamine. Now that I have been on it for 11 months, I am absolutely convinced that (1) It is safe, (2) Finding the right dose is difficult--particularly if dealing with 500 mg tablets, and (3) Finding this site and hopping on the B1 bandwagon is the best thing I have done to remain medication free EXCEPT exercise. At the end of my first email from Dr. Costantini, he said, "You'll be fine forever." Right then, I decided he was either brilliant or crazy, but time would tell. As I near the one year anniversary of receiving that email and after actually being better now than I was then, I'm happily leaning on the "He's brilliant" side.
Slightly Less Intentional Tremor or Sligh... - Cure Parkinson's
Slightly Less Intentional Tremor or Slightly Less Rigidity - B1 Dosage Tradeoffs and Dr. Costantini's Brilliance.
A worthy tribute.
Thanks Jim for posting this! We’ve been experimenting with my husband’s dosage too, having started the HDT 3 months ago. At this stage the noticeable things are weaker voice and anxiety. Some of the great things are no more constipation (having previously been hospitalized), returned energy, foggy head gone, sleeping peacefully, no stiffness, improved mood and actually smiling! After having increased the dose from 1 gram of Thiamine HCL per day to 2 grams per day, then coming back to 1 gram per day, we are now leaving one day per week out to see if that makes a difference. (The reason we cut the dosage back from 2 grams to 1 gram per day was because my husband became more agitated.)
His anxiety is so much better than 6 months ago and the antidepressants are definitely helping, but still room for improvement as he doesn’t want to increase the Lexapro (antidepressant).
There are still times later in the day when his arm swing isn’t happening...would that mean the correct B1 dosage hasn’t been achieved yet, even though there are so many other things that have vastly improved? Maybe we could increase the dose to 1200 mgs per day (he uses the powdered form of Thiamine). Argh..not sure what to do!!
Jenny
I think you're learning to use it very well, recognizing when it's too much or when it's short.
Thanks for the encouraging words Gio 🙂
Jenny try him on Hardy’s daily essential nutrients with Hardy’s inositol and Hardy’s greens and probiotics before increasing any antidepressants. This cured my husband’s anxiety in 3 days and has had more positive effects than any thing else including the pharmaceuticals and he has tried almost every natural supplement on this site. He had been so anxious he was suicidal.
I would be really interested to see if other people have the same miraculous improvement in mood and reduction in apathy. ( note it doesn’t cure the underlying condition but by reducing anxiety it has greatly cut down on symptoms.).
Thanks LAJ, can’t thank you enough. I’ll definitely look into that as my husband has said all along if he could be rid of the anxiety he could handle the PD. He also was in a very dark place before taking the antidepressants so he had to go on them in desperation after trying natural ways. The depression exacerbated his PD symptoms and he spiraled downhill in a month.
Three days sounds like a miracle! Miracles can happen🙂
Yes, I found it miraculous. Look at the ingredients in it. It had lots of things in the proprietary blend as well as vitamins and minerals that are also supposed to help PD eg NAC and acetyl carnitine and lithium orotate plus many botanicals in the greens and probiotics so although it seems expensive it is actually a good way to be able to have all these in one product line. They are made in Canada too which I prefer to China where many others are made.
They will require you to talk to their product specialists and get the ok from your doctor or specialist as they work so well and quickly you can be come overmedicated on the pharmaceuticals. They talk you through the process, and the cost includes over the phone consultations with their experts who can advise you if there are any side effects. You can start on a low dose and build up to the full amount as needed although my husband went up pretty quickly as I had already had him on most of the ingredients all from different bottles which was a nightmare! Some things like trace minerals are hard to source individually though which was why I decided to try the Hardy’s ones, and also a friends son had been taking it from the age of 7 for about 5 years for adhd so I knew it was safe to take for a long time.
Oh dear, I wonder if we’ll have a problem as we live in Australia??
We are in New Zealand and get them from naturezone in Auckland. I am sure they have an outlet in Australia. But the free help line is in Canada and they work with the suppliers.
I’ve found a couple in Aust and if I can’t get anywhere with them I’ve found a contact at Lighthouse Clinic in Auckland.
Thanks for your help!
Can you pls let me know where you can get them in Australia. Thanks
See above Jenny has found them somewhere in Aust. I will ask her where.
I had googled last night and think I’ve found 2 contacts (one in Sydney) so I’ll call them on Monday. I’ll let you know munchy.
Hi Jenny, there are a couple of others interested in buying them in Aust so are you able to post where you get them from if you have success? Thanks 😊.
Of course LAJ. If I don’t have success, could you please share your contact with us?
Oops...just remembered you get them from naturezone in Auckland, please disregard.
I couldn’t find a supplier in Australia (the one that sounded the best has moved to NZ) so ended up ordering through Naturezone in Auckland. A doctor’s letter is not required for the Hardy’s Inositol or the Greens And Probiotics and I’m told they are used for quick relief for anxiety and panic attacks. The Daily Essential Nutrients needs the doctor’s letter stating he has no objection to the drug reduction (eg Lexapro) and one has to be monitored closely as the (Lexapro) is lowered gradually because there is a chance of overmedicating. The NZ distributor also said if one feels uncomfortable telling your doctor you’re going to try an alternative treatment, the Daily Essential Nutrients can be ordered directly from Canada without the letter, something I personally wouldn’t consider! Naturezone Health offer free shipping on orders over $150.
Good luck and hope this helps.
Thanks again LAJ12345 🙂
Great I hope they work for your husband as well as they did for mine. He was on the greens and probiotics for 2 weeks while I waited for the others to arrive so it may be a combination effect of the 3 products but the real change came 3 days after starting the DEN. I found the Canadians were reluctant to sell it to me directly anyway and it was more expensive that way too. He is still going strong with no relapses and we are on the 5th bottle!
Please let me know how you get on as I am recommending them on this site over and over again but it would be good to get some feedback from other people too as to whether they are just as effective for them or whether he is just an aberration. Thanks😊
Thanks LAJ, that’s really encouraging! Yes it will be interesting to see if taking just the Inositol and the Greens will help his anxiety, but he really wants to wean off the Lexapro antidepressant down the track. Will keep you posted 🙂
That’s what I’m thinking too !
LAJ, is your husband, or has he ever been on any type of anxiety meds?
Yes, he started of on fluoxetine years ago until it made him suicidal. Then mirtazapine (remeron) which made him so apathetic I could not get him out of bed in the morning and he would not do anything at all. Not even shower. So I weaned him off that over months telling the GP but a few months after stopping that he had a major anxiety attack and ended up at hillmorton which is the public mental health hospital. They gave him short term anxiety meds clonazapam plus zopiclone to make him sleep as at this stage he was pacing most of the night. And they put him on sertraline which is Zoloft. He really didn’t want to take the clonazam or zopiclone as we read they are addictive after a few weeks even but the sertraline made him so agitated he was worse if anything so he had to take a small amount of the clonazapam as he was suicidal. I had to take him car keys off him as was fantasising about driving into a lamppost. They put him back on mirtazapine to make him sleep so we were back to square one. I am pretty sure mirtazapine was the beginning of PD in the first place as it stopped him doing anything for a year or two and I think his body was winding down.
After 2 months on this combo I was at my wits end as he was worse than he had been before going to the psychiatrist in the first place! So that when I decided to try the Hardy’s products as I had been reading about them and my friends son was on them.
I had to convince the psychiatrist to let him try the Hardy’s products as you need the ok from the doctors before they will sell them to you, and the psychiatrist did not think they would do anything so was wary about them advising him to wean off the other drugs. At this point he was still suicidal on the sertraline and mirtazapine and sleeping half the day again! I had to agree not to wean him off these before the psychiatrist would give the ok to take the Hardy’s.
I was allowed to buy the inositol and greens and probiotics however so I had started him on those and it was another 2 weeks before the psychiatrist said ok to the daily essential nutrients. Then I started him on 1 x 3 times per day, the next day 2x3 then day 3 3x3 and at that point his anxiety dropped amazingly so I went straight on to 4 x 3 per day. He has been on 12 per day for a few months now and has not had a single bad day since even with the mosque shootings which were in our city, and even with our teenagers winding him up he has stayed calm. And he laughs all the time now! Haven’t seen that for years! So after about a week of feeling better the psychiatrist agreed we could drop back the mirtazapine so he now takes 1/6 of a 30 mg tablet at night. He has stayed on the sertraline for the time being as he feels better than he has for years so decided he would carry on with the status quo while it was working. He has picked up activities like coaching kids for football and helping out at the bridge club again and it taking himself on walks etc. he hasn’t been so proactive for a few years.
Ps prior to all of this over the last year we have also modified our diet so he has no sugar or gluten or processed or deep fried food so I think that has also helped his general health although it makes him sad not to be able to eat his favourites. If he sneaks a chippy or junk food it makes him nauseous now.
He does take other supplements too (see my profile) but had been on all of them for some time before starting the Hardy’s so I don’t think they are responsible for the improvement. Maybe it is the synergy between the Hardy’s and other products that is the key but Hardy’s definitely has something in it that made the difference.
What a horrible time you’ve both had! SO pleased you came through, even though at times you feel there is no light at the end of the tunnel.
Does your husband take HDT as well?
Yes, he has been up to 3 g then back down to 1g per day now. Honestly I can’t figure out what the best dose is for him. He started on that about 8 months ago, also mannitol he has been on and off with and still on now. Not sure if it helps at all. Also restore gold he has been on for 4 months now, again no sudden change like with Hardy’s though. All and all I feel he is heading in the right direction, but has urination frequency, and hands that don’t work well and walks strangely with hands in front. His apathy is gone, his energy is higher, his sense of. smell is a bit better, and he doesn’t have the masked face any more. He does still get quite tired. He is supposed to be taking 2x 3 sinemet but only takes 1 in the morning and doesn’t really think it does much. He went up to 3 per day then back down to 1 with no difference.
What a story! You two have been thru the ringer & back. Thanks for all the details. Where do you get the Hardy products from?
Naturezone in Auckland.
It so expensive. How long does 1 bottle of 360 capsules last?
30 days. 12 per day. Expensive yes, but it has a lot of different things in it which I tried to replicate separately and that was harder and more expensive
The apathy is the killer! Can you pls tell us the dose yr husband takes. Thanks
Hi see above 😊
Yes "He's brilliant".
Further to my earlier post, I am still trialling B1 at 1500mg, The jury's still out for me although the improvement in my mental health is still significant, such that my daughter can actually 'tell' when I'm on B1 or off when she's back from Uni.
The reason for my post today is that during my self-experimentation I've dabbled in 250mg 'capsules' in addition to my usual Solgar 500mg tablets. When I take 2 x 250mg capsules rather than 1 x 500mg tablet I experience twitching (dyskinesia? possibly) and initially a worsening of my symptoms. This does not happen with the tablets.
So in a simple test I dropped a capsule and a tablet in separate glasses filled with the same volume of water. The difference, noting the capsule is less than half the size of the tablet, was significant.
The capsule dissolved far quicker and much more effectively than the tablet which tended to clump. I suspect that maybe B1 in powder form provides a greater 'hit' in that more of it is used and quicker in which case it may cause problems for some...........like me.
Lastly 'if' it is so, I wonder how much of a 500mg B1 tablet is actually reaching the brain,
DISCLAIMER: I am not a healthcare provider, scientist, alternative healer, wizard, industrial spy, member of a secret society, mystic or pharmacist and as such not responsible for anything including myself.
(not taking the p**s just trying to keep the mood light)
It’s all about experimenting, as one size does not fit all.
The fact that it has caused ‘problems’ in the past, would that mean that it shows you are a responder, so should persevere until you find the right dose?
Maybe you’re an alien?? 😂
Hmmmm, folk do often say to me "What planet are you on!" and my Grandad's place of birth is recorded as simply 'Area 51'! Could be Jenny
😂😂
Hi Jim, thanks for your update . I am very happy for you and encouraged by your progress. God bless
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+* Day 51 of taking TTFD: (B1) :-)
