My theory on B1: I have read for the last... - Cure Parkinson's

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My theory on B1

LAJ12345 profile image
31 Replies

I have read for the last 6 months people’s experiences on B1. Some people have huge improvements and need large amounts. It seems more and more people are dropping back to much lower levels.

I wonder whether it is because the first group of people who were treated by Dr Constantini were local Italian people with possibly similar genetics; maybe similar DNA mutations which means they are thiamine deficient. Recently people from all over the world are now trialling thiamine and it seems that a lot of them are needing much less or aren’t having such dramatic improvements. I wonder if they have different DNA mutations requiring different vitamins instead of or as well as thiamine. My husband’s genetic testing says he has a large requirement for b1, b2 and b6. He had an improvement to his facial expressions on B1 but after trialling various concentrations, up to 3 g per day he has now settled on 750mg per day and has it dissolved in a bottle of water with mannose, d-ribose, b2, niagen and hardy’s inositol, that he sips on throughout the day.

The thing that has made the most difference to him was starting Hardy’s daily nutrients a month ago which is a clinically trialled, balanced vitamin and mineral supplement. He takes the sipper bottle with the extra vitamins in addition to the Hardy’s product:

hardynutritionals.com/produ...

He also takes Hardy’s greens and probiotics, Restore Gold, fish oil, ubiquinol.

He takes sertraline 100mg and mirtazapine 7.5mg for anxiety and depression and 1 sinemet tablet with uridine but nothing was really working until he started on the Hardy’s daily nutrients.

I think his initial thiamine regime topped up his thiamine deficiency but then started making him anxious. The Hardy’s is topping up all the other vitamin and mineral deficiencies.

Previously I had been trying to replicate the Hardy’s formula with individual doses of the vitamins and minerals and other supplements like nac, etc where they were available to buy separately but when I swapped them all out for the Hardy’s product the difference was night and day. I am not sure if it is because Hardy’s is Canadian made and quality tested where the other supplements are from places like China so the quality may not have been there or whether it is that the Hardy’s DEN have traces of many minerals that can’t be purchased separately. ( my husband had a heavy metal hair analaysis and his arsenic and mercury levels were at the top end of the low band so I was concerned the arsenic may have been from contamination in his previous supplements).

Anyway I urge any of you who are taking a lot of the ingredients in this product individually to swap them out for this product and see if you experience a difference too. It is much easier to take them all from one bottle too and when I look at the number of individual supplements it replaces it isn’t really any more expensive.

PS I am not associated with Hardy’s in any way- I have a friend who has been using it for her son who has adhd and it made such a huge difference to him I thought it might be worth a trial. I didn’t really expect it to make much difference to my husband because he was already taking most things in it but it seemed easier to be taking it all in one product which was quality controlled than many separate bottles.

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LAJ12345
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31 Replies
MBAnderson profile image
MBAnderson

Your theory seems reasonable. Thanks for the suggestion about swapping. I give it a try. Maybe there is a synergy if taken together.

LAJ12345 profile image
LAJ12345 in reply toMBAnderson

Great, please let me know if it works for you too.

Gioc profile image
Gioc

I am happy for your husband improve,

Hardy looks like a good product.

IMHO If we really want to be precise I would look at the boron that is always missing in very small quantities, and take a look at calcium and magnesium dose. I use alacer emergen C and make a lot difference take all vitamins and all minerals all togheter in the right dose and formulation.

I have always advised to eat a lot of fresh and varied vegetables for this, and help with HDT for my opinion.

LAJ12345 profile image
LAJ12345 in reply toGioc

Yes Hardy’s has most Trace minerals including boron in the formula. My husband’s mineral analysis came back with boron levels normal. He was low on molybdenum, iron. All of these things are in the DEN

Fed1000 profile image
Fed1000 in reply toGioc

Hi Giocas, how long have you been using Alacer Emergen C? Are you able to do without all the supplements or take others? Let me explain better: if I started with Alacer, should I give up Mannitol, Curcuma, Omega 3, Vinpocetine to avoid an overlaod?

Gioc profile image
Gioc in reply toFed1000

Non lo so, io mai usati neanche mannitolo, io prendo lo xylitolo e la niacina b3 NA saltuariamente per brevi periodi , b1 i.m, madopar, succo di pompelmo da poco tempo e emergens C.

Le cose che hai elencato sono molto diverse tra loro e ognuna sembra avere un effetto specifico, mentre le vitamine e i minerali sono tutte contenuti anche nell’alimentazione . Puoi fare 2+2 e forse stai già usando tutto.😜

Gioc profile image
Gioc in reply toGioc

traslation:

"I don't know, I never even used mannitol, I take xylitol, niacin b3 NA occasionally for short periods, b1 injections i.m., madopar, grapefruit juice recently and emergens C.

The things you have listed are very different from each other and each one seems to have a specific effect, while vitamins and minerals are all contained in the diet as well. You can do 2+2 and maybe you're already using everything.😜

LAJ12345 profile image
LAJ12345 in reply toGioc

Is grapefruit juice allowed on your medication? It is usually banned with most drugs.

Gioc profile image
Gioc in reply toLAJ12345

YES , CJ it is not recommended, it is not for DIY, only under close medical supervision. I'm just experimenting with it and I only use a little madopar and nothing else.

Has your husband been tested for all the vitamin and other deficiencies you think he has? No genetic information will tell you that he is deficient in any vitamins. It will only speak to an increased possibility.

LAJ12345 profile image
LAJ12345 in reply to

Yes, he has had all blood tests, hair analysis for minerals, urine organic acids which points to which vitamins are missing based on waste products in urine. By the time I had all the testing done he had been on a different multivitamin (enzymatica twice daily) and b1, b multi with Natural forms of b vitamins not synthetic, b12 cobalamin and adenosylcobalamin, methyl folate for a few months plus changed to a no sugar, gluten free, meat and fish low, beans, seeds and nuts rich with lots of greens. These changes made quite a lots of difference in that he lost weight and his acne and roseacea cleared up after a course of berberine , allicin, and probiotics but he still felt really bad. Within 2-3 days of starting on the Hardy’s products he said he hadn’t felt so well for years.

Redginger profile image
Redginger

Thank you for your post. Will look into Hardy's. About arsenic, (heads up) our doc told us that it is in all non-organic apples and rice and chicken. How accurate is hair analysis for heavy metals vs. the urine test where the metals are 'forced' out of the cells?

LAJ12345 profile image
LAJ12345 in reply toRedginger

No tests are that great for minerals because a lot of it is locked up in cells and bones. But if it in hair roots and urine at highish levels it must be there. If the tests come back low though doesn’t mean it’s not there if it is locked away in cells.

Parkie- profile image
Parkie-

Hello Laj

When you say "My husband’s genetic testing says he has a large requirement for b1, b2 and b6", was it a medical type testing from a Genetician/Doctor or a "23 and Me" type of thing?

Thank you

LAJ12345 profile image
LAJ12345 in reply toParkie-

It was using 23&me and ancestry data base but naturopath used opus23 to do analysis and interpreted the results for us.

Parkie- profile image
Parkie- in reply toLAJ12345

Thank you

park_bear profile image
park_bear

My own experience is initially tolerating a large dose and then needing to reduce the dose. My take is that once the initial deficit has been overcome less Is needed.

Gioc profile image
Gioc in reply topark_bear

the most obvious thing is that b1 has to do with the energetic processes of brain cells and that large doses ensure transport across all barriers of the body and cell membranes, but these processes will not be carried out if there are other vitamin and mineral deficiencies.

LAJ12345 profile image
LAJ12345 in reply toGioc

Yes I agree, and I think depending on DNA mutations and different diets and exposures different people will need different amounts of each vitamin and mineral. So Hardy’s may not help everyone but based on our experience it is worth a try as the difference was very quick to notice, especially with anxiety, depression, energy and apathy. He didn’t have many other pronounced Parkinson’s symptoms yet except for hands that struggle with fine motor skills and frozen face. The face is completely fixed and the hands aren’t as numb and work a bit better but still not perfect.

dadcor profile image
dadcor in reply toLAJ12345

At what dose he started improving..??

LAJ12345 profile image
LAJ12345 in reply todadcor

With the B1 or Hardy’s? B1 he went up to 3 g per day but is now on 750 mg. Hardy’s he is taking the full dose of 12 capsules a day but that replaces an equivalent number of supplements he was taking before which is easier than the 8 - 10 individual bottles of supplements he was taking before! You can get it as a powder and just take a scoop with meals but it is a bit bitter apparently so he prefers the capsules.

Erniediaz1018 profile image
Erniediaz1018 in reply topark_bear

This makes sense. I'm going to try reducing the dose.

Despe profile image
Despe

I agree with you LAJ as far as HDT is concerned. My husband has tried different doses of B1 always following Dr. C.'s advice. However, his pull test is now 0-1 step backwards (on a 100mg a week,) and sent the video to Dr. C., but unfortunately he was having his own health problem and could not respond, but no more improvements have been experienced. We are now trying 50mg a week, from previous doses of 100, 200, and 300mg a week. His hyposmia, micrographia, which has been back to normal for quite a while, and his fatigue have considerably improved. I would like to see executive function improvements though. He has just started the new dose of 50mg (in two weekly doses of 25mg) and go from there.

I will certainly look into Hardy's daily nutrients, although I would like to talk to Dr. Laurie Mischley, before any vitamin changes. Yes, I would love to see my husband taking less pills.

Is your husband on any medication or MP?

Thank you for sharing your experience with your husband's protocol.

LAJ12345 profile image
LAJ12345 in reply toDespe

I have put his current regime on his profile for anyone interested.

Despe profile image
Despe in reply toLAJ12345

Thank you.

Despe profile image
Despe

Another symptom which my husband has been experiencing is weakness of lower legs which started after the 300mg a week dose. Doing better but I believe its cumulative effect will take a while to go away, DON'T KNOW ANYMORE, AM CONFUSED!

LAJ12345 profile image
LAJ12345 in reply toDespe

I think too much b1 was what was causing his need to urinate frequently so dropping it back to 750 has helped.

Despe profile image
Despe in reply toLAJ12345

Agree. In general all water soluble vitamins cause frequent urination. My husband's trips to the restroom are also less frequent since he lowered B1 injection dose.

Despe profile image
Despe

"Is your husband on any medication or MP?" Just forget the question, sorry. :)

Kipper1285 profile image
Kipper1285

Did your husband do any sort of heavy metal detoxing? Did he have glutathione5 injections?? I’m curious whether there’s a correlation between a the etiology of the disease and success with hdt? I had a negative reaction (a feeling of caffeine like jitters and anxiety internal quivers) using the average dose 500mg 2x day. Once again out of curiosity (and because I nearly died from b6 toxicity) I had b1 blood level checked and it was waaay above the normal high. So maybe because I’m afraid the boat I decided to go with an extremely low dose and adopt a wait see approach. Does anybody know if there have been blood studies done before and after hdtand were there significant findings ?

LAJ12345 profile image
LAJ12345 in reply toKipper1285

No heavy metal detoxing as such but Hardy’s and restore gold both have alpha Lipoic acid in them which chelates heavy metals. Hardy’s say the minerals tend to bind them and the vitamins help the body recover from them.

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