B1 experience so far!

[Fnjb]

Hello all. I have been tuning in to everyone's experiences since I joined in March 2018. At that time my husband was diagnosed with PD and as I am the more able one with computers I have been reading listening to your experiences and researching your valuable advice. We have had quite the roller coaster ride trying to separate chronic arthritis symptoms from PD rigidity symptoms along with the accompanying list of classic PD symptoms like insomnia, constipation and so on.

Finally after much trial and error with diet, drugs and B1, my husband seems to be in a better place. He is on 2x 100/50 Madopar tabs 3 times a day, a lowish dose of Palexia for his lower back pain and is currently taking 200mg of B1 hcl.

We seem to have most PD symptoms under control except for insomnia which has been a problem for him for decades. We started 500mg B1 at the end of July 2018 which was too high. With Dr C's advice we halved it. Then, we tried going up with worsening symptoms particularly tremor. Now after much coordinating of drugs and vitamins as of the last 6 weeks, my husband takes 200mg B1 per day with noticeable positive results. These include stronger voice, little to no throat clearing, more animated facial expressions, more energy, able to turn over in bed more easily, more social, more stamina - can mow the front and back and edge all in one go, and the list goes on. He will stay on this dose now to see what happens over the coming months.

I decided to add our experience as my husband's dose is a lot lower than the 4g initially suggested. My husband is 73 diagnosed 9 months ago but has had PD symptoms for the past 4 years at least. We live in Brisbane, Australia.

[Hidden]

Fnjb,

Thank you for posting your husbands experience regarding HDT and congratulations to both of you! This adds further confirmation to the idea that HDT can be a very effective adjunctive treatment for PWPs !

If it is okay with you, I will copy and paste your post to the "Who is Taking Thiamine" thread so it can get more exposure on the forum or if you prefer, you can copy and paste it yourself so that it will be easier for you to find and update over time. Here is a link to that thread where you can add you and your husbands experience with HDT :

healthunlocked.com/parkinso...

I look forward to any updates you might post as people have reported additional benefits to HDT usage beyond a year!

Thank you!

Art

[Fnjb in reply to Hidden]

Thanks Art for your reply and positive message. By all means copy and post - very grateful for your conscientious effort to spread the hope of sustained improvement for PwP.

Judy

[Hidden in reply to Fnjb]

Judy,

If you don't mind saying, what is your husbands height and weight?

Thank you!

Art

[Fnjb in reply to Hidden]

About 170cm and 72kg

[WinnieThePoo]

Thanks. Interesting and useful. I have B1 on watch with the expectation of trying it. But it is useful to have a perspective - and remind myself that whilst I definitely have PD its pretty mild and I don't suffer from most of its problems.

[Fnjb in reply to WinnieThePoo]

Hello Winnie the Poo. Just a thought for you to ponder. If indeed B1 stops progression and is not toxic, then perhaps sooner rather than later may save many more neurons??

[WinnieThePoo in reply to Fnjb]

Yup. That's a good point, and one I am acutely aware of. However, over the last year, I am learning to panic a bit less. There are more than a few options on the neuroprotective front, and I don't want to back the wrong horse. I'm not sure if its possible to back all the horses - although that was the initial temptation.

Rubbing rabbits feet, and fingers crossed behind my back, I seem to be having a considerable lack of failure with my current microbiome strategy. So there is an element of "If it ain't broke don't fix it". The path to salvation with B1 is not always straightforward, from what I read, and causes problems for some, and I don't want to muddy the waters just yet.

Also I am about to start a trial for a new drug which could also be neuroprotective, and I would need to discuss with the trial team whether high dose B1 was permitted. I imagine not. If B1 works, it would confuse the results. If it doesn't work, whats the point in taking it?

It remains high on the list to evaluate if things progress and other solutions aren't working. (I realise there is some confused thinking here - if my microbiome ideas work that too distorts the trial result. The trial team clearly think microbiome management irrelevant - a big grey animal with ears and a trunk. Maybe... )

[Fnjb in reply to WinnieThePoo]

Wish you success in your endeavours and choices. Sounds like you are all over it!

[2donkeys]

Thanks for sharing your experience. I will try adding B1 at some point to hubby's regime.

Jennifer

[Motherfather]

keep it up fnjb listen every one here they will help you you only have to ask.regards john.

[Hikoi]

Very interesting Thanks for posting.

I see he is on 600 mgs Sinimet a day as well which will certainly be making a big difference

[Fnjb in reply to Hikoi]

Yes the Madopar stopped the shuffling gait, helped with the stoop and rigidity and somewhat helped with mood and facial mask. However, since finding an agreeable dose of B1 arm swing has returned mood and stamina and a renewed interest in life along with a return of conversation and his sense of humour are all definitely on the upswing. He certainly is not cured, but so much of his personality is returning and lots of positive signs of small steps moving forward. Not sure what is ahead, but so far so good! Of course we are also dealing with chronic severe spinal arthritis so any observable improvement is a good day. Our diet has also changed in this 9 months so hard to know exactly what accounts for which improvement! Just hope it continues!

[Hidden in reply to Fnjb]

Fnjb,

Regarding the spinal arthritis, here are three posts I have written that may give ideas on how to help. This first one discusses the use of magnesium chloride oil (mag oil) to help alleviate the pain and inflammation as well as relax any affected and tense muscles by just spraying on and rubbing into the affected areas :

healthunlocked.com/parkinso...

This next one discusses the use of topical ibuprofen applied directly to the painful areas to reduce pain very significantly while reducing inflammation and nearly eliminating the potential for gastric problems :

healthunlocked.com/parkinso...

This third one discusses the use of the laundry booster called Borax as a very popular online remedy that has done wonders for me and many others with various forms of arthritis :

healthunlocked.com/parkinso...

Art

[Fnjb in reply to Hidden]

Thanks Art, shall investigate

Judy

[Fnjb in reply to Hidden]

Hello Art, very interested in the borax treatment you have undertaken. Wondered if you have any knowledge of how borax might interact with B1. I can't imagine any of the doctors we deal with would have any experience or in reality care about such a 'natural' treatment. I am pretty sure my husband will be pretty resistant to such an idea as well - he is not remotely adventurous and naturally skeptical! So it is a big deal for me when just today, he volunteered that he would be open to increasing B1 again in the next few weeks as he recognises the positive changes , even though some are really subtle so far.

However, I have arthritis in most of my joints. I wouldn't call it severe, but it is getting worse with advancing years. As with B1 which I took 500mg daily for five weeks to prove it wouldn't cause issues, I probably will give it a go. I have taken glucosamine with chondroitin for over a decade. My knees are much better than when I started. I did stop once thinking I was wasting money, but my joints definitely were more painful! So went back on it. Don't care if it is placebo effect - works for me!

Another question. You seem so knowledgeable in all these treatments. Is it from conscientious research or do you have a health/science/medical background?

Thanks in advance.

Judy

[Hidden in reply to Fnjb]

Judy,

I take B-1 and I take borax, but have not noticed any problem with that combination. Yes, I went through several glucosamine multis on my way to trying borax also. For me, the glucosamine multis were no longer effective enough to control my pain adequately.

As far as my background, I just read a lot and self experiment a lot!

Art

[Hikoi in reply to Fnjb]

Interesting, thanks for your reply. I do find it difficult to assess what people write when I have no sense of timing, when madopar was started, increased etc, same with B1. Guess i will have to try it myself but I dont want to mix it with DBS recovery because I cannot tell which is influencing what as you say with your diet changes.

Current thinking is that PD starts at least 10 - 15 years before diagnosis. I have lived with it nearly 11 years post diagnosis and 9 years I can document symptoms prediagnosis. What I notice is some have a slow moving type and others do not, luck of the draw. Attitude and activity are central to a good life to me.

You may enjoy the WPC podcasts. I have just listened to the one on non motor symptoms. I will try and find the link.

[Fnjb in reply to Hikoi]

Thanks Hikoi. My husbands symptoms are mostly the slow moving type.

[Earthman]

Hi Fnjb,

I've also been following the reports on the use of B-1 at this forum, although I haven't participated until today. I've been on B-1 injections for about 6 months now, trying to stick to 2 shots per week of 100 mg injectable thiamine HCL. I say trying, because I have skipped a lot and I feel that in order to get the full benefits of B-1, one must adhere closely to the recommended dosage. Prior to the shots, I was taking 500 mg tabs (Solgar) but, even though I responded well to that treatment (perhaps better than the 100 mg shots) I decided to switch to the injections because I was having a hard time swallowing those huge tabs, better suited for horses than humans.

Question for you: Why take 2 x 100/50 of Madopar 3 times/day. Madopar also comes in tabs of 200/50. I also take Madopar, and I've been able to decrease my dosage from 100/25 3 times a day to half that dosage 2 times/day. I have replaced a considerable part of the levodopa with Mucuna powder with less dyskynesia.

To be fair, I also took part of a clinical trial/study of "Allogeneic Bone Marrow-Derived Mesemchymal Stem Cell Therapy for PD". I took an IV infusion of close to 1 million stem cells back in Sept 2018 and I felt great steady improvement for the next 3 months. Although, around mid december the improvements stopped and slowly some of the PD symptoms stated to come back again. My own non-scientific theory is that my inmune system has kicked in and has started to destroy the foreign cells (?).

I decided tocontinue my B-1 treatment, adhering to the prescribed dosage this time and see what happens.

[Hidden in reply to Earthman]

Earthman,

It is worth mentioning here, since you said the 500 mg tablets are too big to swallow, but may possibly be more effective for you, that some people have worked around this problem by "chewing" the tablets up before swallowing, while others have switched to the 500 mg capsules which are smaller and much easier to swallow. Here is a link to a popular capsule form :

vitacost.com/vitacost-vitam...

Lastly, some have worked around this problem by using the pure powder form and mixing it into other things like yogurt or a sports drink or smoothie. The downside to the pure powder is that it has a bitter taste, but added to the right carrier is tolerable.

Art

[Earthman in reply to Hidden]

Hi Art,

Thanks for the tip. I will check it out.

Best wishes

[Fnjb in reply to Earthman]

Hello Earthman,

Posted this by mistake on the forum rather than replying to you. As I am not altogether sure how it all works - first time I have really engaged in posts - just making sure you get my response.

Judy

Earlier response to your post.

My husband for the first 6 weeks was on 100/25 three times a day. His neuro wasn't happy with results so he upped it with half increase for a week. Since that time we have been experimenting with B1 going backwards twice already. So have just not thought about tablet size. So thanks for that info. Also my husband is not as open to experimenting as many of you on this forum. It has taken time for him to even go along with the B1. However, he now acknowledges that B1 is making positive differences to how he feels. We will just stay where we are at the moment so that we may be able to discern exactly what dose we should adjust - Madopar or B1. Thanks for sharing and good luck with you adjustments in the future.

[Earthman in reply to Fnjb]

Hi Judy,

I've been battling PD for over 6 years now and one thing I learned is that you should try to find ways to reduce your intake of levodopa, not increase it, mainly for fear of dyskynesia. Lucky for me, I found Mucuna to be a fantastic source of natural levodopa which has helped me reduce my intake of chemical levodopa. I believe B-1 is also part of this strategy. Same goes for stem cell therapy. Overall, I feel much better now than 3 years ago when all I had was my neuro's prescription for drugs from big pharma companies. Three years ago I decided to take control over the decisions that affect my health, and practically I set my own course of action, by studying the existing literature, following this forum closely and "experimenting" with alternative medicine. All of that work has paid off, as I can say with confidence that I am on my way to recovery.

Best wishes for you and your hubby!

[Fnjb in reply to Earthman]

Earthman,

Thanks for your response and best wishes. Right back at you! Now that we have participated in this forum, please let us know how your experiment with B1 unfolds. I, for one, would like to follow from afar your success! Also just a note about size of tablets. Admittedly, my husband is only taking a relatively small dose of B1, it is worth sharing that the tablet is quite small in comparison and he has no trouble swallowing it. Also his Madopar is the capsule which is smaller than the tablet as well. Even before his PD diagnosis he has had an aversion to swallowing big tablets and often has not taken possibly helpful tablets because of their size. I'm not sure where you are in the world, but in Australia we can only get the 100mg tablets from local pharmacies. I did buy the 500mg Solgar ones from the US which were huge. In comparison it would be easier to swallow five of these small ones than one of those - a nuisance agreed but where there is a will there is a way!

Good luck on your journey,

Judy

[Erniediaz1018]

Thank you for sharing. I hope he continues to improve.

[Fnjb in reply to Erniediaz1018]

Hello Ernie,

Thanks for your good wishes. Just read your posts. I am so impressed by your determination and perseverance to find a combination that relieves your particular symptoms! On ya mate! I am hoping the dyskinesia is still disappearing. We haven't had to contend with that so far. Sounds very debilitating. Hope your inprovement continues! Will be following your progress with interest from afar!

Judy

[Erniediaz1018 in reply to Fnjb]

Thanks Judy. Yes the dyskinesia has been at bay. Will keep you posted 😊

[Hidden in reply to Fnjb]

Fnjb,

It has been Dr. Costantini's experience that people who do not currently have dyskinesia and start on HDT as adjunctive treatment to multiple forms of levodopa, have not gotten dyskinesia for the length of time he has been working with HDT (approximately 6 years). Also, many of his patients have been able to reduce their levodopa dose once stabilized on their correct dose of B-1. Lastly these patients have never had to increase their levodopa dose once on thiamine!

In Ernie's case, he had existing dyskinesia before starting HDT. The combination of HDT + Mucuna (a form of levodopa) has eliminated his dyskinesia.

Art

[Fnjb]

Hello Earthman.

My husband for the first 6 weeks was on 100/25 three times a day. His neuro wasn't happy with results so he upped it with half increase for a week. Since that time we have been experimenting with B1 going backwards twice already. So have just not thought about tablet size. So thanks for that info. Also my husband is not as open to experimenting as many of you on this forum. It has taken time for him to even go along with the B1. However, he now acknowledges that B1 is making positive differences to how he feels. We will just stay where we are at the moment so that we may be able to discern exactly what dose we should adjust - Madopar or B1. Thanks for sharing and good luck with you adjustments in the future.

[55andpd]

Wow. I’m in Brisbane too. I just started B1 250mgs x 2 per day this week. My symptoms are way worse. I’m going to halve it and see how 1 a day goes.