Hello all of you HU people ~ I am the wife of a PwP, dx 12/29/2020. Our history ( very briefly) ~ left sides tremors and anxiety, mostly. We tried B1 HCL ~ didn’t work. Tried Thiamine mononitrate and that seemed to work for a while Recently I took hubby off all B1. None of them seemed to work anymore.
But reading this post, “Benfotiamine (Fat Soluble Form Of Vitamin B1) and AD” by “chartist” I am thinking that maybe we should try this form. I guess that my first question is ~ should we get some blood work done first & if so what?
We are also just starting Keto and I want to start him on the PS128 probiotic. (I’m impatient).
I just would really appreciate any guidance, recommendations, or just plain comments.
As many others have said, I really appreciate the help, information, time, knowledge of all of you on this forum and I rely on the information and knowledge gained from all of you. So thank you for your help!!!
Have a fabulous day ~ and many blessings!!!
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Lizzy9
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I don’t know if you need blood work to try benfotiame. The stuff is mostly harmless. Often, though, it takes several months to detect a benefit from B1.
Reducing symptoms is not the only indicator of benefit. You need to be careful about how you define whether or not something is working. It may be slowing down the progression and there’s no way to know that, i.e., compared to what?
I have taken every type of B1 at every dose and have not ever felt any benefit, but I still take it on the chance it's slowing down the progression.
As ambitious as you are, you will be improving his health. Keto may be beneficial, but again, I would not necessarily look for an improvement in symptoms, especially right away. Changes in diet take time.
The only other thing I would suggest is intermittent fasting, sleep hygiene, and daily exercise.
Thank you for your informative response. I think that we will give the B1 another try, but at an even lower dose of 25 mg 3 times a week. He’s been off his Thiamine Mononitrate for almost 3 weeks so now is a good time to start back up. The HCL was too high and I couldn’t find a low enough pill.
His sleep is good, which I am so thankful for. He has, however, started taking 250 mg of GABA about an hour before going to bed. Then in the morning if he has a rough time while using the Well Red helmet he’ll take another 100-200 mg of chewable GABA.
We do a 14-15 hour fast. And about 1 ½ months ago he started Rock Steady Boxing.
Thank you for your thoughts and helping me to work through this.
I was diagnosed in 2015. Background: Have tried b1; mannitol, well red helmet, ps128, all to no avail. I have been a vegetarian for over ten years and avoid cheese and dairy. I do sleep well (had sleep study; no apnea) but my symptoms have progressed quickly in the past year, no tremor, terrible fatigue, depression,bradyk, find it difficult to roll around in bed at nite), speech slurring, swallow issues and urge incontinence.. I suspect my Parkinson’s honeymoon is over. I was a cyclist and dancer before diagnosis and I am at the point where I can barely drag myself to exercise due to debilitating fatigue. I believe the thing that has helped me most was rock steady boxing and think that program is the best thing that has happened for PwP.
I agree with Marc regarding blood testing and and benfotiamine. What testing were you considering and what are you hoping to find from that testing?
I don't agree with trying more than one thing at a time as I believe that that can be confusing in trying to determine what is working and how it is working.
It seems like if you want to try PS128, you should do that first since its potential effects can usually be gotten fairly quickly. Once you know what it is doing for you, then you can add something like benfotiamine and see if it offers any benefit as it did for Joy_gitt's father.
Regarding coming off of Th or TM, did your husband notice any changes, positive or negative during or after the withdrawal period?
Hello Art ~ As far as blood tests go, I was reading some other posts and so I just was wondering/thinking there might be something to check. So good to know that I don’t need to.
I agree about not starting too many things at once, I’m just wanting to see improvements now! So thank you for getting me refocused!!! I’ll get him started on the Ps128 first.
As far as his coming off the T-mononitrate ~ I think there has been a slight improvement over this past week to week and a half. He’s been off for three weeks.
I wrote that about 3 1/2 years ago in response to a lot of similar reports of a worsening of symptoms about 6 to 18 months after starting B1 and being fairly stable. The cause is unknown and it does not happen to every B1 user, but it does happen.
So your plan sounds fairly reasonable and in fact, I think Daphne is on a reduced dose. Perhaps he only needs what you are suggesting, about a 25 mg dose every fourth day. It seems worth a try and not much to lose with this test. Keep us updated on how this works out for you. Dr. C also suggested a mini vacation every 3 months as another option to reducing the dose.
Hello LA12345 ~ Thank you for mentioning too much meds. He is on C/L 25/100 3x daily. For a little bit we tried increasing by 1- pill (½ dose) of dopa boost. That helped for a few days, but we had to stop ~ increase in symptoms.
I think I will tuck that into the back of my mind for after we give the reduced dose of B1 a good try. He used to do very well on the B1. So I guess as Art pointed out he must be sensitive to it and needs a very small dose and the holidays!!
However, I would like to get him off prescription med. That’s the only one he’s on at age 72 so he is in good health. And as a side note ~ it doesn’t seem to affect him when on the occasion that he missed a dose of his C/L. Such a tricky and confusing disease!!
Hello Musicallmylife ~ Initially, we tried regular T-H at lower than suggested doses. That was way too much. I never could get a good dose of this form.
So the short of it is, with the help of Art (chartist) I ended up having him on the T-M 25mg (I cut them into quarters) 4-5 days a week. When his symptoms increased we stopped the T-M, which was about 3 weeks ago. It took him about 1 ½ weeks for his symptoms to settle down a bit, but he still has significant left hand/foot tremor and anxiety. I’ll be starting him back on the 25 mg every 4 days as Art has suggested, probably tomorrow. And yes, the one that Daphne uses but I have to cut them into quarters.
yes, thank you. Fingers crossed for you and husband. It’s hard to watch them struggle. I’ll let you know how the sublingual b1 works. Now I’m thinking we should try half a pill Dailey to start out instead of the 1/100mg.
Thank you. Yes, so hard to see them so miserable. It’s so hard to say where to start. When we started all this B1 stuff my husband had only been dx’d about 2-3 months plus he is not a big man, weighing in the 150 pound range. My understanding is that you need to take all of that into consideration. The closer to dx time and the smaller the person, the less they will need.
Hi i was taking Benfotiamine which ran out just before my holiday.Took this opportunity to see how i coped without it.After 2 weeks i have had very bad body torso rigidity and a kind of squirm when seated.Just gone back on the Benfotiamine and hopefully this condition will improve
I take 1000mg of Benfotiamine prior to this i was taking B1 so im just experimenting to see whats best :)Benfotiamine is apparently fat soluble and just got me thinking the Brain is often described as a fatty substance...really its just trial and error i think the changes can be quiet subtle and not necessarily dramatic wishing you all the best
ive had recently great results with diet (cutting all dairy, fried food and meat). Massive impact in improving symptoms. Also coincides with starting curcumin so maybe that helps too?
Hello Edge999 ~ Thank you for your information. I know diet can have a huge impact on PwP’s. We eat a very clean diet (sugar only for family celebrations), organic/grass-fed, lots of vegetables, minimal fruit, minimal to no grains, NO fast foods!, etc.). Right now we are omitting grains. I don’t want to do too much at the moment since we are going to get back on B1 T-M.
Years ago we were vegan for about 3 years, (extremely healthy vegan!!). We had excellent results for the condition we were treating at that time. However, my HwP doesn’t want to go that route at this time.
As so many on this forum he takes a pile of supplements, curcumin being one. We’ve taken curcumin for several years, even before dx.
I’m glad that your diet and curcumin are helping you!!
I am 67 and have PD since 2019 and I am handling it reasonably well. I have tried the following in order of efficacy
1. 60-120 minutes of exercising that includes Yoga, HIIT with RougePD from LA, btw RougePD is probably the best online PD specific exercise site.
2. I am trying to do Mindfulness meditation to control my stress and anxiety and it works.
3. I became a healthy whole grains. Vegetable, foods based Vegan because processed foods red meat and dairy are suspected to aggravate inflammation and also can vause constipation. The most recommended diet for PD is MIND diet and not Keto. Please check out MIND diet.
4. I did try PS128 probiotics for 4 months without any improvement
For me, the combination of exercise, healthy diet, stress management thru meditation of some sort and ofcourse Sinemet along with Multivitamins, B Complex, Magnesium Complex is probably the best combination so far. I also am planning to get DBS surgery in few months.
Thank you CHH1234 for sharing what works for you. Last summer my HwP put around 2000 miles on his e-bike. In the fall he developed a pain in his Rt. Glute/piriformis muscle area. So far we have tried chiropractic and PT and maybe something else, I don’t remember at this moment. Right now we are trying acupuncture and massage (the massage here at home ~ me). We just started so we don’t know for sure if these will will help. Needless to say, that has put a huge halt on his exercise, however he is sticking with Rock Steady Boxing and he has taken his bike out a few times now that we have some good weather, but he is cautious. He stays busy here at home also.
As far as diet goes, we have for many years since going off vegan been eating grass fed beef and free range chickens and dairy. From what I’ve read, a lot of what is said “out there” seems to lump conventional and grass fed/ free-range and organic into the same pile. I, personally believe that they are two different food groups. I will check out the MIND diet.
I watched a video by Dr. Matthew Phillips in New Zealand that more than one person posted here and his trial results were very impressive supporting a Keto lifestyle. But keto is NOT for everyone and it is hard!!!😳 and we must keep in mind that this disease is not “a one size fits all” so we keep trying for the perfect fit. I am so thankful that there are so many, such as yourself, who will share what is working for them! Hopefully your regime will give someone some more really good information and help.
Thank you again for taking the time to share what is working for you. And thank you for mentioning the MIND diet. Is it difficult? I hope not!
With your list CHH1234 I do indeed have very good experiences, including the MIND diet. With some discipline easy to follow and you can also prepare very tasty meals with it. Also very important! Moreover, at the moment (for most of us), it turns out to be the best diet for PD as I recently reported in a contribution.
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