Benfotiamine has previously been discussed on this forum regarding PD and this recent study (October 2022) using Benfotiamine (BEN) in AD patients shows some significant benefit for people with AD :
Here are two relevant study quotes from this human AD/BEN study :
' The trial tested whether a twelve-month treatment with benfotiamine would delay clinical decline in amyloid positron emission tomography (PET)- positive patients with amnestic mild cognitive impairment MCI (MMSE ≥ 26) or mild AD (26>MMSE>21) compared to placebo (52). The primary clinical outcome was Alzheimer's Disease Assessment Scale-Cognitive Subscale (ADAS-Cog-11) and secondary outcomes were the clinical dementia rating (CDR) score and brain glucose uptake measured by fluorodeoxyglucose (FDG)-PET. The trial showed that benfotiamine at a dose of 600 mg per day is safe and very well tolerated in patients with early AD. The treatment delivery achieved a 161-fold mean increase in blood thiamine. In the intent to treat population(ITT), the benfotiamine arm showed 43% reduction in the ADAS -Cog decline of the placebo group (p = 0.125), with a larger effect size in the CDR where the benfotiamine arm was 79.2% less than the decline in the placebo arm (P = 0.0129) (66). '
' Plasma measures from study participants revealed multiple metabolites/lipids as novel potential biomarkers that might be pharmacologically responsive to benfotiamine treatment. Two dozen biomarker candidates including thiamine, tyrosine, tryptophan, lysine, and 22 lipid species, mostly belonging to phosphatidylcholines reflected reversal of changes related to AD progression. The results suggest potential mechanistic pathways that underlie the benefit of benfotiamine in AD (71). '
Given the known safety profile of BEN at the dosage used (600 mg/day), BEN seems to be a worthy consideration as part of an anti AD regimen
Art
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Thiamine/Alzheimer's Disease studies to receive funding: “Burke Neurological Institute Receives a $45 Million NIH Grant to Study a Vitamin B1 Precursor for Treatment of Alzheimer's Disease in Multi-center Clinical Trial”
Looks like the same research group and that is great news! I've seen so many studies that looked very promising only to see that there were no follow up studies and in this one, not only a follow up study, but by the same researchers as the first study. Wonderful!!! Sometimes the NIH makes an impressive move by funding the upcoming study with $45 million.
This study should also further expand on how Benfotiamine may be useful for PD with the research they will be doing on the effects of Benfotiamine on the brain! Exciting!
I follow HDT with intramuscular injections 2xweek 100mg thismine hcl. I use benfothiamine and thiamine hcl pilllole when I can't do injections, like on vacation. Now after 8 years I recognize the symptoms of deficiency or excess very well that I adjust according to these, my dose varies from 250 mg to 1000 mg of benfothiamine per day divided into 4 times when I use pills.
Good find, Art! Maybe it is time to give another form of B1 a try. Besides, there was discussions about Benfo in the past. I would imagine it will help PD MCI, too.
Not my PD, Art. Hubby is the PwP. I will give Benfo a try. B1 HCL is a challenge--hard to find the sweet spot. One day, one thinks "That's it," but 2 days later, new symptoms appear. . .
I saw some of your posts on another forum my dad has PD 18 yrs has DBS takes 6 Siment daily but in recent years has become more and more unstable daily and lots of decline found Dr C and B1 and wanted to try more natural but having a hard time as well we get past 200mg hcl form and he has worsening symptoms added magnesium 2 - 250 extended release takes a very good gel multi with a b blend C D and now adding electrolytes drink blend with salts potassium etc and yesterday switched him to-benfotiamine to see if he can tolerate that better than the hcl I see a lot of people use that
I’ve heard it’s less strong than the hcl and you need more not sure on dosage
Also ordered the injection b1 hcl but not sure where to start him because of his oral sensitivity
I saw your husband used to do injections with Dr C did he have worsening of symptoms on injections ?
My husband doesn't have the B1 IM injections any longer. He stopped it when Dr. C passed away. We had sessions with him (email, video with my husband walking, having the pull test, etc.) so Dr. C could advise him what dosage of B1 injections was good for him. He was doing great, unfortunately he had to start oral B1. He has never found the "silver bullet" but he continues to take a small dosage, 50mg which he recycles. Another problem with the injectable form of B1 was a pharmacy to fill the prescription although our FP would prescribe it.
He was doing very good until he took a fall while he was out walking. He had a C4 fracture, and from there on he went through a lot! He was hospitalized for a month and then rehabilitation for another 2 months. As a result of his fall, he couldn't swallow, got aspiration pneumonia and had to have a feeding tube. He was also placed on Foley catheter while he was in the hospital and he still has it. He no longer needs the feeding tube, but left it in place. . . Also he is scheduled for HoLEP a laser procedure to shrink his very, very enlarged prostate and be able to void on his own.
Several forum members, Art, Gio, and others can educate you more on B1. Also, you can search this site and find a lot of B1 posts. Go to the upper right hand box Search HealthUnlocked, click on it and you will find a lot and useful info.
Best of luck!
PS. Hubby is on 40% MP plus half a carbidopa X2/day and takes one Sinemet CR in the evening.
Ty so much for responding and sharing all that info so appreciated!!
I’m so sorry to hear all that you guys have been going through! We went through similar difficulties when I dad got COVID while receiving radiation for prostrate cancer
He was in the hospital over 30 days it was AWFUL because he was weak failed swallowing test wouldn’t let him eat or take meds entire time forced us to get the feeding tube and also overloaded him with fluids and put him on cath wouldn’t let him go home with out it
So he went in eating drinking and urinating all on his own left with a feeding tube and cath sent his sugars sky high had to go on daily insulin injections it was crazy!
But with much prayer time and persistence we got him off the feeding tube and the cath and the insulin and got his strength back so hang in there trust what you know he can do and not always what they tell you (they didn’t want us to remove anything!)
With PD they get weak when anything like this comes up but they do recover just a little slower most health care providers (especially hospitals) don’t get that and over react at lest that’s was our experience
I’m going to be praying for you guys keep me posted on how he is doing I know how stressful it is
I was also wondering do you remember what dose of the injections he started him on and did he build up from there?
I got my injectable B1 from vitastir.com you just fill out a health form they have a in-house dr review it and ship it right to your door it’s about $160 with coupon for 1 months supply
I am so sorry for what you went through, I UNDERSTAND!
Dr. C had him on 100ml X 2/week. He then had him increase it to 3/week. Dr. C had him try out different doses. When he was increasing B1, we would notice his symptoms got worse, so we had to lower the dose until no worsening of symptoms. It's basically a trial/error effort.
MP stands for Mucuna Pruriens (also called Velvet Beans), the natural form of Levodopa. Our MDS at Vanderbilt suggested adding 1/2 t carbidopa to it. Basically you have a "Sinemet" but with better results and no side effects, at least for my husband. Several forum members take this combination.
Well, here's a question. My husband has atypical PD. We do the Vielight treatments he is on the PS128 probiotic and C/L 25/100 4x day. In December we finally were able to get an appt with a "Center of Excellence" for PD and they only suggested he increase his c/l. That's it. But his BP was dumping with the extra dose, so he is back to 4x day.
So now I am wanting to start him on B1, but am confused on the type, esp with this post. He has also been undergoing chelation and MAH (IV ozone) therapy and has had 22 treatments since October. HIs Heavy Metals Report showed extremely high lead and gadolinium (contract dye for MRI's) levels and 3 other moderately high levels which his chelation doc said not to worry about those, and that the chelation would take awhile for the lead and contrast dye to leave his system. When I told the chelation doc I wanted to start him on the B1, he said take the Benfo type, but he has not read the B1 book. I read the B1 book and would like to start him on B1, and am leaning towards the sub lingual as its less pills per day. But now Benfo may be good? Anyone care to comment? BTW, after about 16 chelations, hubby and I definitely noticed a difference - he was more aware of his surroundings, more engaged, more talkative, but it only lasted for less than a day. Now, after 22 treatments, we may be seeing him improve for 48 hours or more. Fingers crossed!
And thank you to all those in this forum, I have learned WAY more here than seeing 3 different neurologists. Also, the chelation doc said he is not 100% convinced hubby has PD... he has little if any tremors but has cognitive decline, stiffness, slowness, drooling, difficulty walking, decreased fine motor skills, moving in bed, etc.
Given what you have relayed I would select Benfotiamine. Start at 300mg once per day and move to 300mg twice a day if no adverse reaction. 600 mg is what is reported as effective in the research literature.
But there is no correct B1. Try any one, and see what works.
Started my spouse with Parkinson on Benfotiamine because the literature revealed it worked well on diabetics. She is not officially diabetic, but has problems handling a large sugar-load. Used it for well over a year, without seeing discernible results.
However Dap1948 reported she used sublingual Thiamine Mononitrate and had improved facial expression. Thought a switch was worth it. My spouse responded very well over the last six months.
Have I then abandoned Benfotiamine? No. Got a sixty day 300 mg supply, which comes on stream when the sublingual Thiamine Mononitrate supply ends. Sugar management is still a problem.
Don’t become paralyzed in making choices. Try something - always at or below the dosing level suggested and look for reactions.
Sometimes the reaction takes months, sometimes days. Bad reactions you quickly back out of, before any major harm is done.
Stay alert and keep moving!
P.S: Don’t miss the Magnesium part of the equation. B1 is the spark plug and Magnesium is the spark. 🌹
PwP are sometimes noted for insulin resistance. The magnesium you mentioned is useful for improving glucose handling. Berberine will also help manage glucose levels and reduce insulin resistance while improving insulin sensitivity and additionally having antioxidative stress activities and acts as an anti inflammatory.
Btw, what dose of benfotiamine was your wife taking for PD ?
P.S: A glucose tolerance test (GTT) will show, the inability to handle a glucose load. Have not done it, because I have seen fist hand the effect of a large slice of cake. 🥲
Super appreciate your insights! I will definitely try the Bento. As far as Magnesium, we have been taking Mag L-threonate for many years. I also rub mag oil on his feet (not every night, but often) and I think it really helps his REM sleep disorder. The mag oil is much better absorbed than oral mag and can cause itchiness if used on legs/limbs - some say they get used to it, but we just use it on our feet before bedtime. Thanks SO much!
If you apply a small amount of lotion on top of the mag oil, it will definitely reduce itchiness and that "different feeling" that mag oil causes in some people.
One of the many beneficial effects of melatonin is that it can help protect humans and animals from the damage caused by heavy metals. The following article discusses this aspect of melatonin and may be worth consideration by your husband until the chelation process he is currently involved in is completed. This may help ongoing damage during the chelation process to remove lead from his body :
' Its widespread sub cellular distribution enables it to interact with toxic molecules thereby reducing the oxidative damage to the cell. Melatonin also acts as antioxidant, chelating agent, anti-apoptotic agent and as an anti-aging molecule. These qualities of melatonin have been found to ameliorate the toxicity of heavy metals in man and animals. Melatonin prevents adverse effects of lead on immune system, nervous system and anti-oxidative enzymes. It does contribute in the prevention of lead induced genotoxicity. Melatonin alleviates cadmium induced cellular and endoplasmic reticulum stress, unfolded protein response (UPR), germ cell apoptosis and neurotoxic effects. Its protective effects against mercurial toxicity include myocar-dial toxicity, renal toxicity, neurotoxicity, thyrotoxicity and reproductive toxicity. Protective effects of melatonin on arsenic toxicity are manifested through anti-oxidative mechanisms. It induces autophagy and mitochondrial biogenesis. '
Melatonin also helps protect mitochondria against oxidative stress induced by heavy metals
If you do decide to test benfotiamine in your husband, please keep us updated on how he does with it!
Thank you Art for the melatonin insight. I"m a little leery of using it due to what Consumer Lab says (an independent 3rd party testing lab- I have a subscription) but I have used it in the past for him in doses of .5 more or less. This is what they say: "Melatonin safety and side effects: Short-term use of melatonin supplements appears to be generally safe for adults. However, melatonin can potentially affect blood pressure as well as testosterone and estrogen levels. Melatonin can also interact with certain foods and medications. Long-term use is associated with an increased risk of bone fracture. It is probably best to use melatonin "as needed" rather than on a regular basis." HWP has extreme varying BP and we are now working on increasing his Free Testosterone with DHEA before we go to injections.
This is also what Consumer Lab says: " Melatonin may also improve sleep in people with Parkinson's disease (in which the body's own production of melatonin may decrease), but it does not improve motor symptoms of Parkinson's (Mack, Oxid Med Cell Longev 2017; Medeiros, J Neurol 2007). This was most recently shown in a study in Korea of 34 men and women with Parkinson's disease and poor sleep quality. A 2 mg dose of prolonged-release melatonin taken one hour before bedtime daily for one month improved self-reported sleep quality (particularly the time it took to fall asleep and sleep disturbances), but not motor symptoms, compared to placebo. The study was funded by Kuhnil Pharmaceutical Company, which markets prolonged-release melatonin (Circadin) sold as a prescription drug in certain countries, but not in the U.S (Ahn, Parkinsonism Relat Disord 2020). "
And this may be of interest: "A study in Korea found that melatonin was not helpful in men and women with REM sleep behavior disorder (RBD)(a condition characterized by intense dreams and behavior such as laughing, yelling, kicking and punching during sleep) of unknown origin. In the study, 2 mg or 6 mg of prolonged-release melatonin taken 30 minutes before bedtime for one month did not reduce the frequency or severity of episodes, nor improve sleep quality, compared to placebo. The melatonin used in the study (Circadin, Neurim Pharmaceuticals) is sold as a prescription drug in certain countries, but not in the U.S. RBD can occur in people with Parkinson's disease, although none of the study participants had Parkinson's disease (Jun, Ann Clin Transl Neurol 2019).
Their top pick for low dose based on having the exact amount listed and price was ConsumerLab's overall Top Pick among melatonin supplements and for a low dose is Swanson Melatonin 1 mg. I have used Life Extension since it is a liquid (who needs more pills)? If you have any recomendations on dose, etc, I'd appreciate it. Thank you again!
To start with, this comment from the above, ' Long-term use is associated with an increased risk of bone fracture.' is simply wrong and was likely taken from an old study. Newer studies show that melatonin helps prevent or treat osteoporosis and helps with tissue healing and maintenance of bone and cartilage as well as fractures. Here is a 2021 study that confirms this :
' Melatonin increases new bone regeneration by promoting the proliferation and migration, as well as the chondrogenic and osteogenic differentiation of MSCs. Melatonin also increases the level of VEGF and contributes to angiopoiesis at the site of bone injury, further promoting healing and preventing ischemic injuries. '
' Inflammation and oxidative stress are inevitable during bone injury. Melatonin is known for its potent antioxidant and anti-inflammatory properties. Oxidative stress produces reactive oxygen species (ROS) and is usually promoted by aging (22), which can lead to excessive bone resorption (23,24). Melatonin is considered a potent natural antioxidant, not only due to the direct inhibition of ROS, but also due to the mobilization of the intracellular antioxidative enzyme system. Melatonin can protect MSCs against oxidation-induced apoptosis by reducing ROS production, enhancing cell viability and promoting continued differentiation (25). '
' Vascular injury often exists simultaneously in bone injuries, such as fractures, which inevitably leads to ischemia and/or hypoxia at the injury site and is extremely unfavorable for the repair of defects. Ischemia/reperfusion can cause excessive ROS production in tissues and lead to cell damage (29,30). Melatonin can eliminate these adverse effects and can be used in fractures with vascular injury and compartment syndrome (31). '
This 2023 study explains how melatonin can repair osteoporosis bone defects:
' We discovered that melatonin increased bone trabecular regeneration and repair in osteoporotic bone defects caused by iron overload. In conclusion, melatonin enhanced the osteogenic ability of iron overload-induced MC3T3-E1 cells by activating the PI3K/AKT/GSK-3β/P70S6k signaling pathway and promoting the healing of iron overload-induced osteoporotic bone defects in rats. '
It is my opinion that if you are in the business of reviewing supplements and discussing relevant studies relating to those supplements, you should make sure that your studies are up to date, still relevant and reflecting the most current science??? If you are not going to keep your studies up to date, why add them at all?
I don't know if this would apply to your husband, but low dose melatonin has been shown useful for reducing nocturia in men with PD at just 2 mg/night as outlined in the following 2021 human study :
' Twenty patients (12 males; mean age 68.2 [SD = 7.8] years; mean PD duration 8.0 [±5.5] years) with PD reporting nocturia were included. Administration of melatonin was associated with a significant reduction in the primary outcome bother related to nocturia measured using the International Consultation on Incontinence Questionnaire Nocturia (ICIQ-N) (p = 0.01), number of episodes of nocturia per night (p = 0.013) and average urine volume voided at night (p = 0.013). No serious adverse events were reported. No significant improvement was noted in bed partner sleep scores. '
I have written extensively about the value of melatonin for PwP here :
I have also written about how melatonin can help prevent cardiovascular disease and stroke, that people with PD are at increased risk for. Melatonin is a smart molecule with a very good safety profile as proven in multiple studies. As far as melatonin and PD, it has shown benefit in at least 3 studies using People with PD. In one study they used 10 mg/day and in the other two studies they used 50 mg/day in each study. All three produced positive health effects in the participants.
You have posted a lot of info on Melatonin. Would like to try for hubby PWP. However, there is so much to read. Sometimes, I'd just like someone to say Hey, Linda. Why don't you put Hubby with PD on this and this or this because it will help with his this or this. And make my life a little simpler. Doctors certainly don't.
Exellent info and yes, more updated than on Consumer Lab. I am totally on board esp for the nocturia positive effects, bless him, he had a prostatectomy and radiation which destroyed his sphincter in his urethra. THANK YOU! Will look at your other posts for sure. I appreciate your attention to detail~
My husband with Parkinson's (diagnosed 18 years ago) has all the same symptoms ie "little if any tremors but has cognitive decline, stiffness, slowness, drooling, difficulty walking, decreased fine motor skills, moving in bed, etc."
In this animal study it is shown that Benfotiamine, but not Thiamine, activates the Nrf2/ARE pathway. Nrf2 is known to increase antioxidant status and is one of the main methods of action of Sulforaphane which would be useful in many health conditions including dementia:
' We found that BFT and its metabolites (but not thiamine) trigger the expression of Nrf2/antioxidant response element (ARE)-dependent genes in mouse brain as well as in wild-type but not Nrf2-deficient fibroblasts. Active metabolites were more potent in activating the Nrf2 target genes than the parent molecule BFT. Docking studies showed that BFT and its metabolites (but not thiamine) bind to Keap1 with high affinity. These findings demonstrate that BFT activates the Nrf2/ARE pathway and is a promising therapeutic agent for the treatment of diseases with tau pathology, such as AD, frontotemporal dementia and progressive supranuclear palsy. '
In the following study it is suggested that advanced glycation end products (AGEs) and their receptors (RAGE) are associated with cognitive decline and dementia :
' These findings suggest that AGEs and RAGE were associated with the pathophysiological processes of cognitive decline and dementia, although their role in the long term should be further clarified. '
In the following study it is suggested that BEN is an inhibitor of AGEs by 40% :
' Benfotiamine, also known as S-benzoylthiamine-O-monophosphate, is a lipid-soluble derivative of vitamin B1 (thiamine) and is absorbed up to 3.6 times more than water-soluble forms. Vitamin B1 is associated with a 120-fold greater increase in the levels of metabolically active thiamine diphosphate. Its lipid solubility allows it to penetrate the nerves more readily. It has been found to provide a higher bioavailability of thiamine than its water-soluble counterparts.292-294 Benfotiamine reduces advanced glycation end-products (AGE) by 40%, which has been shown to prevent macro- and microvascular endothelial dysfunction in individuals with type 2 diabetes.295-300 '
In this next study it is suggested that BEN is an inhibitor of AGEs and RAGE :
' Benfotiamine, an AGE formation inhibitor, attenuated diabetes‐induced elevation in AGE, RAGE and collagen cross‐linking without affecting hypertriglyceridaemia and hypercholesterolaemia in diabetic mice. '
These studies highlight two methods of action by which BEN helps to ameliorate dementia, reduction of AGE and reduction of AGE receptors, RAGE.
Hi Art my dad has PD 18 yrs has DBS takes 6 Siment daily but in recent years has become more and more unstable daily and lots of decline
We found Dr C and B1 and wanted to try more natural treatments but having a hard time
He is very sensitive to meds so we get past 200mg hcl form and he has worsening symptoms added magnesium 2 - 250 extended release takes a very good gel multi with a b blend C D and now adding electrolytes drink blend with salts potassium etc
yesterday switched him to-benfotiamine to see if he can tolerate that better than the hcl I see a lot of people use that I’ve heard it’s less potent than the hcl and you need more not sure on exact dosage starting & raising protocols for this type
we started with 300mg first few days (lowest it comes) when we first switched him over didn’t seem to show much benefit then we raised him to 600mg seemed to show some improve but still had fatigue then we raised him to 900 for a few days did amazing great talking waking energy but then had worsening of symptoms so he is on a break again now
Not sure where to go from here I have great hope because I see these wonderful improvements before he overdoses
Especially on the bento type
Also ordered the injection b1 hcl from vitastir.com since I’ve heard people do better on it with less side affects but not sure where to start him because of his oral sensitivity
I read on Dr C’s web site and in the book by Daphne Bryan that a starting dose and usually the final dose is either 50mg 2 x weekly or 100mg 2 x weekly
Dr C said that the injectable dose is equal to 140x’s the oral dose my dad has only been able to tolerate 200-300mg over 5-6 week period
If I have him even 50mg that would be much more than that
I would have to give him 10mg - 15mg injectable 1X a week to be equivalent
So my question is am I trying to give the equivalent and work him up like the oral
Or is the injectable better tolerated and I should start at the 50gm 2 x’s a week
I know the overdose will not have serious life threading effects but at 80 & 18 yrs with PD as unstable as he is these days he has fallen 3 xs during his worsening it usually affects his waking and bruised ribs and lost of cuts and bumps don’t want him to break anything
So just really trying to figure this out safely but also affectively for him
You have to keep in mind that some people do not respond to B1 for up to 7 months. Also, all potential benefits for your dad will not necessarily come all at the same time and expecting them to is not being realistic.
I get that time is of the essence because of his condition, but pushing the dose higher too fast is not the answer. Please understand that the effective dosing of thiamine hcl reported on this forum over years is between 25 mg and 4000 mg.
You said, ' He is very sensitive to meds so we get past 200mg hcl form and he has worsening symptoms '
These worsening symptoms are a clear indication that the dose is too high, so it would make sense not to exceed 200 mg/day and possibly experiment lower if he responds better at a lower dose.
I think it is a mistake to think that oral thiamine hcl (TH) is going to be the same as thiamine mononitrate(TM) dissolvable tablets. Generally, dissolvable TM requires a significantly lower dose than oral TH.
If he was getting a good response to TH at 200 mg/day or less, you should have left him there to see what his maximum benefit from TH is. Once you have established that, then would be a good time to try experimenting with a lower dose of TM as outlined in Daphne's book, in order to see if he will be one of the lucky ones who has a slightly better response to TM over TH.
You might also read this to get a better understanding of how to adjust dosing :
I don't have any experience with the injections, but given his previous experience with oral TH, I would definitely try fine tuning the oral TH in order to establish his best response to it in order to have a realistic basis for comparison in order to determine which one of the three is most effective for him. Please give the TH at least a few months in order to do your best to see what his maximum response to TH will be. Trying to push the dose higher when symptoms are deteriorating is not a good thing to do. Clearly his optimal dose appears to be at 200 mg of oral TH or less per day.
ty so much for you detailed and thoughtful response I really appreciate it!
I have a few follow up questions
1st the not moving him up, he wasn’t doing great very minimal improvement seem at 200 and according to Daphane’s book we were to start low hold for 4-6 weeks and then increase dose is that wrong?
2) we tried bentofinine regular capsules 300mg each started at 300 raise to 600 then to 900 he had overdose symptoms so we gave him a break and then restarted at 300 (the lowest it comes in)
To answer number one, you can start low and work up or you can start high and work down. Dr. C generally started high and worked downward if needed based on overdose symptoms, but he was working with TH, not TM. TM generally requires a significantly lower dose than TH, so starting low and working up seems logical.
Did you notice any benefit at 100 mg of TM? You said minimal improvement at 200 mg, but that sounds like possibly no improvement? Did he have overdose symptoms at 200 mg? If not, perhaps you should have continued higher, but you don't say if you did that or not?
Your second item seems to be more of a statement than a question. Some forum members have not responded to B1, so that has to be considered also. It seems, as far as we can tell on this forum , responders are the majority.
This thread is running a little long and it is getting hard for me to remember everything you have said regarding your dad, but clearly, he seemed very responsive or most responsive to Benfotiamine as you stated in this statement :
' we started with 300mg first few days (lowest it comes) when we first switched him over didn’t seem to show much benefit then we raised him to 600mg seemed to show some improve but still had fatigue then we raised him to 900 for a few days did amazing great talking waking energy but then had worsening of symptoms so he is on a break again now '
So going back to Benfotiamine (BEN) makes sense, however 900 mg is too high of a dose and 600 mg is too low of a dose. So some potential ways to lower the dose down from 900 mg are as follows:
1. Buy 80 mg Capsules of BEN from Swanson and take two 300 mg capsules + one 80 mg capsule to equal 680 mg per day.
2. Buy 80 mg capsules of BEN from Swanson and take one 300 mg capsule plus five 80 mg capsules to equal 700 mg per day.
3. Alternate between 900 mg one day to 600 mg the next day. 900>600>900>600 = 750mg day
4. Take two 300 mg capsules of BEN + two 80 mg capsules of BEN to equal 760 mg per day.
5. Take six 80 mg capsules + one 300 mg capsule = 780 mg per day
4. Buy 80 mg capsules of BEN from Swanson. At 10 per day that's 800 mg day.
5. Take two 300 mg capsules + three 80 mg capsules equals 840 mg per day.
6. Take one 300 mg capsules + seven 80 mg capsules to equal 860 mg per day.
7. Take elven 80 mg capsules per day to equal 880 mg per day.
So assuming your dad's response to BEN is the best you have seen of what you have tried, then the above should be a doable way to optimize his dose since you already know that 600 mg/day is too low and 900 mg/day is too high.
Here is a link to 80 mg capsules of BEN from Swanson :
Since you already have 300 mg capsules, you could consider the the 750 mg dosing schedule as a first choice. 900 mg one day followed by 600 mg the next day and repeat.
that is great advice and I really appreciate the detailed methods I hadn’t considered alternating between the doses as an option
Yes we have tired the hcl oral the Benofinate and now I found a place to get the injections we have settled at - 600mg when 700 was causing a little agitation been doing pretty good on the shots but I still think he was little better on the Benofinate and I’m really considering going back to it
I read alot about the need to experiment with different types of thiamine and since my dad was having tolerance problems before we could see any lasting symptoms relief without overdosing
I thought that was a good idea to try different forms to see which he did best with
You have to keep in mind that Dr. Costantini based that information about benfotiamine not crossing the BBB, on studies he had read about benfotiamine, not his clinical experience and it also assumes that the benefit being derived from B1 by people with PD is due to its activities in the brain, not the gut microbiome. You sound as though you think that benfotiamine is doing more for your dad than either of the water soluble forms of B1 and Benfotiamine is also useful as a dementia inhibitor or treatment and in some aspects of heart protection in diabetes. Based on your experience with benfotiamine in your dad, that may be a path worth pursuing, especially since you are already close on the dose in the 600 ~900 mg range and as you said, ' 900 for a few days did amazing great talking waking energy but then had worsening of symptoms so he is on a break again now '
It is definitely worth taking notes and doing videos to help you and your dad determine which form is doing the most for him. Don't forget to include the pull test as a method to help determine the optimal dose of whatever you decide to use.
TH = Thiamine Hydrochloride which is what Dr. Costantini recommended.
TM = Thiamine Mononitrate which has been said by several forum members to offer better results for them compared to TH.
Benfotiamine is a fat soluble form of B1 for which there has been limited feedback on this forum that I am aware, but you are making it sound as though it may be more beneficial than either of the water soluble forms, TM and TH.
Get the Benfotiamine dose optimized and then you can try TM to see if your father gets a better response than benfo. You need a basis for comparison in order to determine which form of B1 is most effective for your dad. Trying to rush things can be counterproductive.
I also really want to start slowly replacing his Siment with Mucuna & carbadopia asap he is having more and more side affects and less benifits after 17 yrs
He takes 5 1/2 100/25 Siment a day
Schedule is
9:00am -1
11:30 - 1/2
1:00 - 1/2
2:30 - 1
4:00 - 1/2
5:30 - 1/2
7:00 - 1/2
9pm - 1
I bought these and had his dr prescribe the carbadopia she suggested replacing the 1/2 doses 1 at a time for a week before replacing the next
My question is, is these the right dose of mucuna that is equivalent to what he is taking?
She said it was fine but I have read people saying they use a 40% L-dopa MP
Also read an article about the need to Eliminate his Ragline (Not right spelling lol) before you start the MP but will that negatively affect the Siment he is still on? Or do I wait until all doses are replaced until I do that?
I see some people replace most doses but will keep a few of the Siment what is my goal that will be most affective for him with lest side affects?
Really need some guidance
I’m sorry to have so many questions at once I’m late to the natural side of things and he is not stable and I really want to improve his quality of life asap
I can't help you with MP as I have no experience with it, but I suggest only concentrating on one thing at a time such as benfotiamine until you get the dose optimized. This way, you will know exactly what is doing what . If you start or change multiple things all at once and you run into a problem, you will have no clue what is causing the problem and will have to stop everything and that will only put you behind and waste time.
I don’t remember seeing that In her book I’ll have to reread yes agree about the not too much at once
The pull test I have used my question is when should it be stabilized after the 4-6 weeks at the right dose or would it not be until the 3-6 months for oral doses?
The pull test is used as a form of confirmation that the dose is at or very near optimal. A good pull test in conjunction with good and noticeable symptom improvement is thought to be an indicator that the optimal dose has been reached. In the specific case of your father, when he was at 900 mg of benfo and doing "amazing great", would have been an ideal time to do the pull test to add confirmation to the idea that his dose was at or very near optimal.
I haven't read Daphne's book, but she has stated on the forum multiple times that she is using dissolve in the mouth TM at a relatively low dose compared to the dose levels that forum members have reported for TH. She uses the 100 mg TM dissolve in the mouth tablets.
If you haven't read this regarding TH dosing that I wrote awhile back, you should. If you already read it, you might give consideration to reading it again as it will answer many questions regarding TH dosing.
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Hubby is the PwP. I will give Benfo a try. B1 HCL is a challenge--hard to find the sweet spot. One day, one thinks "That's it," but 2 days later, new symptoms appear. . .
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