Why is it that the HDT of B1 is with Thiamine instead of Benfotiamine? Thiamine is water soluble and Benfotiamine is fat soluble. I have read that Benfotiamine "enters cells more easily than Thiamine." And I have read that Benfotiamine can cross the BBB whereas I have read that thiamine can not. There have been mouse model studies of Benfotiamine on ALZ and it has been beneficial. (I am not a mouse and I assume you are not either.) When I have searched for info on Benfotiamine on HU there has been little but obviously there is a massive amount of discussion on B1. Any information would be greatly appreciated.
Vitamin B1 : Thiamine vs. Benfotiamine - Cure Parkinson's
My husband uses both. His dose is between 1600mg to 2400mg and he tries to use half normal b1 and the other half benfotiamine. Not sure if its making a difference, but I like that the benfotiamine crosses BBB, so that's why he uses it. I figured it can't hurt.Cheers
I have researched this a bit more and have read that benfotiamine does not cross the blood brain barrier. Sulbutiamine does cross the blood brain barrier. It has not been researched much. Fursultiamine has been shown to cause minor cognitive improvements in people with ALZ. Prior to increasing my B1 I need to confirm that it is the best form of B1. To say "thiamine" is quite vague as there are different forms.
Myself and others have experienced reduction in neurological symptoms from thiamine HCL. This is evidence it does get across the blood brain barrier.
Have you tried other forms of B1 like Benfotiamine or Sulbutiamine? Sulbutiamine is sometimes a prescription medicine. Benfotiamine does not cross the BBB either but it is believed to be more effective.
Lucien Bettendorf is one of the foremost experts on thiamine and this is his research. (Please note the "Results" chapter and the following).
Dr. C relied on this as he has said in several interviews.
IMO Thiamine HCL has a much higher safety profile established over a hundred years of use in medical field, something that the other forms do not have as confirmed by comments and reviews on sites like Amazn.
This fact alone makes for me a difference.
Since there are no formal studies of B1 on PD, it helps most PWP on this forum to relay to others for B1 Hcl dosage adjustment and related symptoms discussion.
What you'll struggle with is getting the B1 dosage right for yourself, but I don't see the harm in combining Benfo (150mg with ALA) along with B1 Hcl which crosses the BBB through passive diffusion when thiamine in the blood level is high, the reason why a high dose is required at least in the beginning until the active enzyme transport restores slowly.
See some of the below threads for the questions you've raised. The search feature on this forum does not do a good job and will mostly show the results of the post titles only. You're better off searching on Google.
I add a previous post where a great expert, Mr. Greenday explain something .
Great post, very technical, just for lovers of the genre.
Are you saying it is OK to combine HCL with TTFD? My husband is on 150mg HCL, 100mg am and 50mg pmish. Reading this post, and based on your knowledge, I might recommend to him to take 100mg HCL am and 50mg TTFC (Allithiamine). Did I understand right?
You absolutely can. The below video originally posted by Kia directly pertaining to the topic is worth reviewing again.
I would consider supplementing about 2 caps/500mg (some PWP may need up to 4) of citicoline to modulate glutamate and for methylation support. Adding methyl B12 sublingual is also a good idea to bypass gastric intrinsic factor - methyl donor, protects against glutamate, etc. We already discussed the need for molybdenum.
Thanks! He is taking all the methyl donors except not enough Potassium. Our FP had prescribed it for his swollen ankles and he took it for about a week or two, don't remember exactly how long, but it did work for his swollen ankles. Is Potassium supplement same as the prescription one?
I watched the video which I believe I had watched some time ago. TTFD is a more tedious B1 to follow than HCL. Guess if we can add 500mg-2,000mg Potassium, then he would have all the methyl donors to add TTFD for his pm B1.
I don't think TTFD is more tedious - it's the form that directly passes the BBB without depending on transporters even at a lower dose. The possible issue that may arise could be that some people who're undermethylated with deficient sulfur metabolism and compromised glutathione recycling or redox balance might experience side effects under finite nutrient resources or deficient enzyme functions. Lately, I've been taking Benfotiamine with ALA more often because I notice a direct benefit with blood sugar regulation, and occasionally cycle with TTFD. I was suggesting sublingual B12 and citicoline because they're both of extreme importance for PWP who tend to benefit, not specifically because they're needed for TTFD.
Prescription potassium comes in higher doses than can be found through supplements that are usually capped to 99mg per pill for safety. Potassium is an electrolyte and will not contribute to being a methyl donor.
I remember warning you about a year ago to be cautious about mannitol that could cause an osmatic shift of K out of cells and may get in the way of replenishing deficient K. If the blood work is showing low K, try lowering the mannitol dosage. Sometimes taking zinc will raise K level more efficiently than supplementing K, so you could try adding Jarrow's Zinc Balance. Also, ubiquinol tends to benefit the renal functions and peripheral edema but be sure to only take it during AM - it's one of those supplements that'll cause insomnia if taken near bedtime.
What would I have done without your advice?
Maybe I should write what he takes (all of the supplements you recommend):
D3+K2 liposomal (10,000 IU D3, 360mcg K2) Pharmacy (Dr. Hyman's)
B12 - Tricobalamin (3 forms of B12) 3,000mcg Designs for Health
Complex of Phospholipids, Liposomal Phosphatidylcholine, PC - Given by our homeopathic doctor (very expensive, too )
Liposomal Glutathione - 500-1,000 mg QuickSilver (liposomal was recommended by Dr. Mischley after a month's intranasal prescription)
Zinc - 25mg - liposomal Givol
Energy wise he is doing great. Never asks for a nap.
Despe, thank you for listing out what your dear hubby is taking. I do not know what some of it is but it is a great jumping off point for me and knowing your husband is taking it and you research so much and are so involved, it is so reassuring and helpful. I have found the Liposomal Glutathione by Quicksilver online but it needs to be kept cold I believe and I'm concerned that it will loose potency in transit. Do you buy it in person?
I understand that Liposomal Glutathione is encased (for lack of the proper term) in fat so that it can hopefully make it to the colon. I wonder why sublingual glutathione is not an option? Maybe it needs to be in the colon and not the blood stream? I did not inspire to being a scientific researcher but we must advocate for ourselves.
I just noticed he is not taking B1?
Every time I see that little poodle image pop up in my comments section I get a little lift.
Wow, thank you for all your flattering comments, especially for my little "boy." He passed away 13 years ago following a surgery for an obstruction that was not there!! He was misdiagnosed by Board Certified "Internists and Surgeons" mistreated and died after the killing surgery. It took me years to find closure. I now have my fifth toy poodle, all four previous ones have passed away, the last one in a very similar way, last July. Their veterinarian bills were sometimes higher than ours!
Yes, you are right, Liposomal Glutathione has to be refrigerated. My neighborhood compounding pharmacy carries many quality vitamins and supplements, among them Glutathione, and I purchase it there. I have, however, ordered it on line from Amazon, and it was shipped packed in gel ice. As I wrote, Dr. Mischley sent an intranasal prescription to my compounding pharmacy, and he was on it for a month. She then asked him to switch to Liposomal Glutathione.
Oh yes, he is been on B1 since 2018. He was Dr. C.'s patient who had him on intramuscular injections for a year. After his first injection, he called me and said "Honey, I am normal again." The response was unbelievable. Over the course of time we trialed oral B1 to find the sweet dose, not a easy task. He is now on 150mg a day, 100mg in the morning and 50mg early afternoon. He takes his 1/2 t Sinemet with Magnesium, Vitamin C, B1 and one capsule MP 40% L-dopa. This MP was ordered by his homeopathic doctor as patients can't order it for themselves.
My childhood dog was a pale grey toy poodle. She passed away young too for similar reasons as you shared. Then we had a cockapoo who sadly passed away young as well. Someday I look forward to having a little poodle or something fluffy, adorable and sweet! They bring so much joy. Thank you for sharing what your husband is using. It is helping guide my decisions and research.
I have an appointment with Dr. Mischley at the end of March. My husband wants me to consider postponing because of the investment but I hope it will be worth it.
That is amazing about the B1 injection having such a response! I am sorry if I am terribly nosy but why not continue with the injections?
We have just ordered a Vie Light panel and I am contemplating the Vie Light for the head but am concerned about EMR. You research so much that I doubt I could suggest something you have not already heard of but just in case I wanted to share that.
Dr. Rhonda Patrick has talked about the benefits of sauna's so I hope to invest in a sauna.
I am going to order the Liposomal Glutathione although I am perplexed there is not a sublingual one. Liquid IV sounds like a good product. Thank you for sharing that with us. I will get that as well.
I personally believe a very high dose of D3 is worrisome for hypercalcemia potential - I've posted about this several times. In my opinion, taking a very high dose D3 regularly should only be done under the close supervision of a Dr with continual blood tests to fall within an optimal range (to avoid deficiency) because this varies greatly per individual. Why this is especially important is because excess calcium in the body will contribute to increased neural excitotoxicity, especially dangerous when combined with glutamate dysfunction and oxidative glutamate toxicity common in PD.
Part of the action of magnesium is that as an antagonist to calcium it is a natural calcium channel blocker. Mg blocks the NMDA glutamate receptor and stops glutamate firing (calcium is like a bullet), and the sympathetic fight-or-flight nervous system is triggered by excess unregulated calcium. Excess thiamine may also promote Mg deficiency, and Mg loss (as well as Zn next to go) is exacerbated by stress/anxiety which may be directly attributable to worsening symptoms of PD under stress. While some of the HD B1 protocol purists may want to start with only B1 hcl for incremental monitoring, this is a very bad idea for the majority of the modern population who're already deficient in Mg consuming nutritionally depleted diet. This is why I always recommend Mg supplementation as a required co-factor and at least a good mehtyl B-complex (including p5p, since some fail to convert to the active b6, also for MTHFR defect) that work synergistically with thiamine to avoid a potential metabolic block.
The reason I tend to recommend Zinc Balance is that it contains Copper (antagonistic to Zn), and I'm wary of people supplementing Zinc without adequate Cu (excess is also harmful) in the diet for proper balance. More on this - healthunlocked.com/parkinso...
Please give me time to "study" your response, LITERALLY, as I don't have your knowledge and expertise.
He was under Dr. Mischley's supervision for D3 and had the right tests at least twice. He is a little above mid-scale (77). She then told him to take 8,000 IU D3, which he did in the summer. He is back on 10,000 IU now in the winter.
Mg - Sometimes I feel he takes too much, not orally, but epidermically . He sprays his legs with Mg oil or Mg lotions which we have plenty of.
B-complex - I believe the one he takes, Sigform liquid is one of the best in the market. It has all the Bs in the right form.
Dr. Mischley also recommended Liquid IV, which basically has all the right minerals. In addition, he takes Dr. Dean's ReMyte with all the right minerals as well.
The only mineral I would like to add individually is Potassium.
PS. Dr. Mischley wanted him to take all his vitamins/supplements in liquid or liposomal form as they bypass stomach and they are best absorbed.
Some people do have D3 absorption issues necessitating a high dosage. Lacking gut health, digestive enzymes, or insufficient bile could also reduce the absorption. What matters is that he's under close supervision with periodic tests. To improve liver/bile function, look into TUDCA (Nutricost, synthetic) and try it for about a month - this could be beneficial.
You can take either potassium citrate or potassium chloride. I prefer potassium citrate (I use NOW) myself because it is a urinary alkalizer and helps my renal function. Take it 1-3 times divided through a day to start slowly.
Depending on his B12 status, trying a sublingual methyl B12 (I use Jarrow's) to diffuse into the bloodstream (held under the tongue) may be better than a liquid form to actually bypass the gut absorption issue.
I don't believe you could overdose with Mg transdermally, at least not to the point where it affects the adrenals. I would consider adding an oral supplement (liquid or caps) to raise the serum concentration and to aid in the overall mineral balance since I don't see enough on your supplement list. Hypokalemia could be in result of Mg deficiency.
Thank you. I am about to go on line to order some vitamins and will order Potassium Citrate. I hope the addition of Potassium will help with his frequent urination and ankle swelling. As far as Mg, he takes Dr. Mercola's Magnesium L-Threonate, 3 X day. Are you suggesting that it's not enough? Add more to it?
His B12 is sublingual as well, with all three forms of B12. At one point, Dr. Mischley had recommended just cobalamin or a short period of time.
"As far as Mg, he takes Dr. Mercola's Magnesium L-Threonate, 3 X day." - That should be good enough. I didn't see that on your earlier list. 👍
Holding some liquid B vitamins under the tongue for longer than necessary can also help, as well as divided dosages. You're good.
Look into TUDCA. Helping digestion and liver function should be the core of any health and detox effort.
Sorry for the intrusion, any food or supplement list of Methyl donors? I have read folate, vitamin B12, methionine, zinc, betaine, and choline are donors.
You are right, all that you mentioned are methyl donors.
Any food list? Also a bcomplex with zinc folic acid mecobalamin would do??
Eat as much organic as you can. We follow the Mediterranean diet which Dr. Mischley recommends. Take a B-complex in the liquid form which is better absorbed as it doesn't have to go through the stomach. Folate, not Folic Acid, and B12 are in the B-complex. If you want to up your B-12 take an additional one, either liquid or sublingual. Everyone must take Zinc, especially for COVID prevention.
Thanks. Have ordered sublingual MeCobalamin. Have read somewhere that Zinc inhibits other vitamin absorption.
Don't use calcium, zinc, or magnesium supplements at the same time.
Various vitamins and minerals can have competitive inhibition when taken together and could affect absorption, so in order for optimizing absorption, it's best to take them at a separate time but for a convenience factor, you can take them together as in all multivitamins unless you have a specific deficiency you're trying to address. Zinc is incredibly important for myriad body's processes and it's best absorbed when taken with a protein meal. pubmed.ncbi.nlm.nih.gov/108...
Thank you so much! I spent so much time sifting through looking for the informative posts. I had not heard of passive diffusion. I thought that thiamine did not cross the BBB simply because it is too big to. I have now read that if the thiamine level is high enough in the body it may reach the brain. So interesting. Once I get this B1 figured out I am on to Glutathione and Butyrate. Oral glutathione makes no sense to me nor does oral Butyrate bc how does it make it to the colon? I had a positive experience that I am attributing to Butyrate supplements but it defies logic and evidence yet I have read others have had the same experience.
It is amazing to think that we have to do all of this research ourselves. I spent a large and painful sum on a functional medicine doctor that was not awful but was not someone I am going to be blindly deferring to.
Rescuema, you are amazing with your knowledge and willingness to correspond. I am so grateful to you. You are helping so many of us.
The article I've attached will explain the mechanism in detail. Thiamine is like a spark to an engine - without it in the brain, there will be no ATP and we'll simply expire while the brain consumes about 20% of the oxygen with every breath we take with a high metabolic requirement. No thiamine, no energy.
You’re very welcome and we all try to contribute and learn through one another to connect that extra dot- I see you doing the same!
Thank you Rescuema. It is a goal of mine that I can reciprocate that support and knowledge that I am receiving. Not only is the information invaluable, it is emotionally so helpful to not feel so adrift at sea.
I used to take Benfothimanine, but haven't bought it for ages and got out of the habit. Initially, I recall the Benfothiamine seemed to increase my stamina/strength, as did Boron. But I've fallen off the wagon for both. and your post about the "spark" was a good reminder of the need to resume both. I've just re-ordered LifeExtension Benfothiamine and will re-order Herb-ology Boron too. 👍 If anyone knows of better brands for both, I'd appreciate the recommendations.
I use Dr’s Best Benfotiamine150+ALA formula since they works synergistically and reduces the number of pills I take daily. I tested low on Boron on hair mineral analysis a while back but only supplemented sporadically to avoid deficiency. I know what you mean about falling off the wagon- it’s a battle to find a balance to be kind to our kidneys vs number of pills to catch up. I cycle through all of them so that I only take a handful a day and some of them get left behind. B1 is an exception and remains a staple along with Mg. 🙂
Thanks. Which magnesium d'you take?
I use all types but take Life Extension L-threonate most often near the bedtime.
Ah, ok. Mag can make some people feel more fatigued, so I now prefer to buy Mag Malate, as it's supposed to help with that.
I use various Mgs for different purposes, including using Epsom salt for hot soak baths. Malate can be useful for binding/detoxing aluminum and def better for daytime use than l-threonate that helps with sleep.
I don't have a bathtub. Some magnesium supplements worsen my fatigue, that's why I'm trying Mag. Malate.
It's possible you may be experiencing adrenal stress and want to be cautious of electrolyte balance such as sodium so that it doesn't get too low when Mg builds up. B vitamins could also help - I like Pure Encapsulations B Complex Plus. You may be interested in the below video from another post above as well.
My potassium was at the very top of the lab ref. range, literally at the highest number of the lab ref. range when I had lab tests about a year ago. This was despite not knowingly taking potassium. Any thoughts on that would be appreciated. Thanks. 🖖🏻
Are you taking NSAIDS or other pharmaceutical drugs? - could impair the excretion of K. Insulin resistance can be another cause for hyperkalemia - exercise and sweating could help. The fact that your K is very high means your renal function may be compromised (excess K simply get excreted by normal kidneys), so upping the ubiquinol (2-3x/day) could help along with proper hydration, being careful to increase your sodium intake (depending on your BP) and also Mg - both are antagonists to K. Try upping Mg (glycinate, citrate, malate, etc) with the good methyl B-complex (in case of MTHFR defect). You may also want to examine your dietary K intake- such as banana, potatoes, etc. and possibly see if your oxalate intake is too high (spinach, kale, etc) affecting your kidney functions.
I don't know if any of the links that I posted a few yrs ago would be of interest or relevance to you but, regardless, here's my post - you may have to click Join to read/access it. 👍
EO nutrition talks about this on U tube. ALLITHIAMINE interesting. And the video on methyl donars.
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