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Parkinson's Movement
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The B1 rollercoaster

I’m puzzled about B1. I’m pretty certain at times that it helps me (I’m generally symptom free re. Cognition, evacuation, mood and energy levels), but am prone to crashes with motor symptoms including bradykenesia and poor right arm swing. Quite suddenly these things can take a nose dive and I then start to wonder if B1 actually helps me. At the same time I’ve read that it’s most effective at addressing non-motor symptoms. Would the community concur with this or not?

Also I read of members taking quite large doses of Levadopa whilst taking B1 and this puzzles me too. Surely if ones taking CL in serious quantities it’s actually the drug that’s masking symptoms rather than B1?

Thanks for any responses 😊

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I assure you C/L is not masking B1.

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But how would you know unless you weren’t taking the CL Roy?

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Taking c/l long before b1.

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I only take B1 with no meds and it helps me tremendously, no doubt!

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How long has it been since you were diagnosed? Thank you!

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How much do you flake?

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Take? Lol

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Exactly a year ago I was planning to retire because of non-motors symptoms. All of them were cleared by B1 which partially helped with motor symptoms , too. But, the precision of the dose is critical for motor symptoms. If I take 1 to 1.5g/day the motors symptoms hit the minimum while the non-motors are ok in a wider range (1 to 3g/day). When I took 2g/day my tremor was more intense but went down if I made a break for few days; that's why I decided to go lower to 1g/day.

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I take 3g and have been as high as 5 and as low as 1. I’ve been at it for a year now and still wonder if I’ve reached an ‘a-ha’ moment. Maybe I’m expecting too much? Certainly my pull test is normal and I’ve never had a tremor.

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I tried 3g/day for two weeks but my tremor went high plus the other motor symptoms. One time the pulse went high so I got scared. It seems 1g/day taken at 11 am give me the best results for now. Maybe 3g is too much for you. Eventually take a 3-4 days break of B1 and see what happens. If better than that's a sign you need to lower the dose.

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Cheers

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yes same here jeeves its got me thinking as well.ill wait a bit longer.im about the same if i take it or not.regards john.

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This is a great summary of how and why ...

blog.parkinsonsrecovery.com...

Hang in there my friend!

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My man! How’s everything?

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Jeeves,

I think that many HDT testers who post the best results may sometimes have a significant amount of symptoms and symptom severity and also happen to respond quickly to HDT so they may be somewhat surprised by the quick and very significant response they have gotten early on from HDT and their posts reflect this surprise. On the other hand, if those same people had taken three months to see their first improvement and then every other benefit came one at a time over the following 6 months to a year, the gradual change might not be perceived as so amazing even though they would still be in the same place.

It is easy to forget how bad we were when the benefits come slowly over time and that is the reason that Dr. C insists on the videos, because so many of his patients had felt that they had not improved on HDT, and some, even felt they had worsened, but when they went back and looked at the videos, the improvements were obvious, even to the lay person! Forum member Celtis, is one of the best examples of this. He had been on HDT for many months and was thinking that he had not improved much if at all. Then he read the HDT page that list the 80 symptom improvements that forum members have reported on this forum at this link:

healthunlocked.com/parkinso...

After Celtis read that page, this is what he replied:

:::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::

Art, thank you so much for what you have done /do for us all. I had started to doubt the benefits a little, thinking it wasn't working as well as I had thought it would and I realised, reading your list

, that I could list a lot of those benefits : better handwriting /typing, depression lifted, greater energy, better sleep, feeling like the person I used to be, finding my old energy and creativity again... so, though my tremor is worse, I think I just have to persevere with getting the best dose. Your post is the most encouraging thing! Thank you.

:::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::

This is why I recommend to people testing HDT to not only make the videos for Dr. C, but to make their own videos that are much longer and show the person doing all types of everyday activities like going up or down stairs, walking up and down the street or in a large figure eight, taking broad exaggerated steps, turning in circles, speaking for an extended time, while eating and talking and walking at the same time etc. These longer videos will give you a very good idea of exactly what changes may or may not have taken place over the HDT testing period. These videos give the historical perspective of symptoms that we sometimes forget over time, but the videos keep it real and erase or confirm any doubts.

As far as those nosedives, it seems that even PWPs who have exceptional symptom control, run into them and stress is often mentioned in the same post!

As far as whether HDT is doing anything useful for you, you always have the option to stop taking HDT for a couple of months and that should answer any questions as to what HDT is or isn't doing for you and if you determine that it isn't doing anything for you then that will be less pills that you have to take and if it is helping you, then you can get right back on HDT and resume the benefit just as it used to be with not much of a loss to you!

Art

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Lovely response Art. Thanks so much😊

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My symptoms do fluctuate, sometimes for unknown reasons, but all in all vitamin B1 has helped me with motor symptoms.

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Jeeves, my husband is in your shoes. :) Started HDT injections in June of last year at 100ml X 2 week. Always, following Dr. C.'s instructions he trialed the dose several times until December 2018. However, when first started HDT, he was 180 lbs and in December 2018 until now he weighs 164 lbs. Last advice from Dr. C. (December 2018) was original dose (100ml X 2 week) based always on his original weight. My husband felt that his symptoms were worsening and started with lower dose, 50ml X 2 week. He felt fine at this dose, but unfortunately got bronchitis and I guess that influenced the results of HDT. Since December 2018, he's been on this lower dose, but tremors, although still intermittent, got more intense. His voice is hoarse now, his bradykinesia has not improved nor his scooped posture which is not that bad but still needs improvement. His hyposmia was improving but took a downhill turn along with his arm swing. I personally feel my husband needs to up his dose, but he doesn't want to. Any suggestions?

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On recomendation from someone on HU when I was experiencing B1 problems similar to your husband, I added magnesium theonate, every other day, and vitamin d every day. This helped, and now, I take the magnesium every 2/3 days, and 1,000 D daily.

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Hi Kerrington! He takes magnesium daily plus I spray his legs with magnesium oil before he goes to bed after our every other day walking. He also takes Vitamin D daily, 10,000 IU to 15,000 IU alternating it per our pharmacist's advice who practices FM, too.

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I was reading about side effects of too much D. One is little known...laryngeal edema. May acct for vocal issues ??

Also, somewhere on Easilly's HDT pages is info from Dr C magnesium doses that he recommended to some HU users. I remember it wasn't a lot, or everyday. You've got a lot of stuff to sort out. Me too ! I just tried 1 capsule of Pure Science L dopa, and I was whipped...back to my Keter Wellness ! Good luck.

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Kerrington, thanks for the heads up on Vit D. However, his dose was/is based on test results and the alternative doctor's recommendation. I will sure check it out though.

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PS. My husband is not on any meds, just MP 15%-20% L-dopa for a total of no more than 300mg of L-dopa a day. That is another frustration, trying to find the right dose of MP. One day is fine with one specific MP, the next day he is not! :( We have an appointment with Dr. Laurie Mischley next month, and a MDS at Vanderbilt in May which it took a YEAR to schedule it!

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Please give us an update about the consultation with Dr. Mischley !!

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I sure will. We mostly want advice on vitamins and MP. I noticed that her practice carries the same MP my husband is taking. :)

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Maybe he should up his L-dopa ? I take 240-300 mg 2 to 3 times a day, much more when I go visiting friends, or go out to dinner.

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Yes, I was thinking about that, too. He tried it before and told me that he felt "high."

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My sentiments exactly maybe up the Mucuna

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My personal opinion is that when on HDT therapy, one has to consider, age, weight, origin, and stage of PD.

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Despe!

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Tried HDT at 2g x 2 times daily. Great result for three weeks then crashed. Saw the entry from Dr C re ethnic origin and body type. I am anglo saxon, slight build. Trying again took 1x500 mg with breakfast for two weeks - felt no difference. Yesterday added 1x500mg at lunchand real difference in gait by dogs bedtime walk. Today I feel well so will continue this dosage and see how it goes. Thanks to everyone on this site, realized again on Friday when I saw my nuerologist fo second time that we only have each other. Her standard rely to my questions 'don't know'.

Diagnosed Feb 2018. Currently prescribed and taking 25/100 C/L 3 times a day with an additional 25/100 C/L Slow release at bedtime

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Keep in touch. Am interested in your dosage results. I’m Celtic but not slight. Btw is there a need for the nighttime dose? I tend to think it’s best trying to preserve the CL for daytime myself.

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Nightime dose prevents morning staggers

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Really glad for you. Love to read how people do well once they find the right dose. My husband was diagnosed in March 2018. Started HDT in June. He realized improvements with his hyposmia, arm swing, and good mood. Like Jeeves' rollercoaster, from 100ml injections X 2 week, he is now on 50ml X 2 week. No more improvements, actually tremor and mood are worse. He started HDT when he was 180lbs (down from 203 lbs) but unfortunately he has lost more weight and is now 163lbs. Today, he had another 50ml injection, but we decided it's time to take a break and start again in a couple of weeks with oral administration. The dose will probably be 500mg once a day and adjust from there, like you.

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Desperate it’s all a bit weird to me also. I can go weeks doing pretty well then crash out with a reversion of bad motor symptoms. I have an idea that B1 makes me a little blase with diet (you know ‘I can eat shit cause I’m on B1 which takes care of everything’). Maybe some fasting and improved diet is needed as an adjunct to B1?

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Whey protein isolate! 😎

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Could you pls share a bit more on this whey protein isolate.? You've mentioned several times already about it..

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Dr. MIschley told me no dairy at all....NO whey protein. I asked her that specifically. I was using goat whey protein.

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But God do I 💖 milk. A really bad habit of mine.

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Kefir is made of milk, yet it's highly recommended for gut health, GO FIGURE! Am using it daily, the grass fed one, of course. My husband can't stand milk so he is using organic coconut milk with his cereal.

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Alrighty no whey jose!

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What’s the science behind this?

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Dr. Mischley's research of over 2000 PwP, I believe. I have an appointment with her April 8 so I will ask specifically why. I LOVE cheese and am learning to live without it. You do get used to not having it after a while. I also have rosacea so dairy is out of the picture with that too.

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We have an appointment on April 4. However, I did order Immunocal for my husband as he's lost a lot of weight. I am worried about him and we are trying everything so he will gain some weight and muscles back .

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I don't want to have to say this (to myself!) but diet has to be key. I've had a couple of days of not eating well at lunch (high carb, processed, gluten) and each day have felt cr*p by 2pm ish. When will I learn????

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i know buzbyc - something looks good, and you feel well at the time, you get greedy, and then you suffer from 2:00 til 4:00 .....add protein to your list - even a little bit of cheese or nuts....

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Alright, let me tell you everything I know about whey protein and dairy. People say dairy is bad because its pro inflammatory, increases mucus and phlegm, and is disastrous if you are lactose intolerant.

Lucky for me, I am lactose tolerant and I don't have these problems.

Undenatured grass fed whey protein isolate is the closest thing to mothers breast milk that you can ingest. They put it in baby formula. It contains a great deal of cysteine which raises glutathione. There are many numerous benefits to this, including anti cancer, detoxification, increasing energy, longevity, stamina, strength, muscle recuperation after exercise, mental clarity, and more! Whey protein isolate contains no lactose. It does contain bcca's and immunoglobulin. I was advised by a doctor with a PhD in nutritional medicine to try it and I would notice a difference within 3 months. Dude, I noticed a difference in 3 days!!! That is why I am such a pusher of this to all my good friends here.

Let me also add that you should choose organic nutrition as much as possible, to decrease the toxic burden on your cells. This also made a noticeable difference in how I feel, quickly . Again, more energy, less fatigue, more clarity,, less foggy, less sluggishness.

If you want to stop feeling like crap all the time, give Undenatured grass fed whey protein isolate and organic nutrition a try for 2 to 3 months. I guarantee you it won't make you worse. Unless you have chronic kidney disease. Then I'm not sure if this type of protein is ok or not.it might be, I'm just not sure .

Do it and please follow up with me !!

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Please can you tell me the brand and where you get it from? I have been using Immunocal Platinum for my chronic lung condition (my husband is the PwP) but it is very expensive here in Australia. Sounds like it would be good for him too, but he has not long started on HDT and I wanted to get a true indication of how he goes on the B1 without introducing anything else. I was put onto this by another person who has the same condition as me (bronchiectasis) and they swear by it, but I’ve had my doubts as to it being dairy. I’ve been taking it for approx 2 1/2 months.

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I really can't see how it qualifies as dairy after all is said and done although it does come from milk. Only all of the milky stuff has been removed. Immunocal platinum is undenatred grass fed whey protein isolate with creatine and minerals. It is the best and most expensive. I use promix and muscle feast. Add creatine and minerals if you want. 5mg creatine and a multivitamin should do ya. Again, if you have chronic kidney disease skip the creatinine. Or check with your nutritionist.

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Sorry 5ml creatine

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Thanks heaps. I appreciate your opinion. I’ll persevere with it a bit longer.

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I actually started eating undenatured grass fed goat whey protein because of you last year. I got my mom to start eating it too. I was enjoying it (makes me feel like I am eating cheese) but stopped last summer when Dr. Mischley put the kibosh on it.

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Is she all into vegan and stuff?

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No, not especially. I believe she found a correlation between consumption of dairy products and PD in her research.

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Maybe because its allegedly pro inflammatory

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This is when it’s confusing I’ve been allergic to dairy all my life and still have PD, the rest of my family had milk , yogurt, ice cream etc and none of my sisters or parents have it

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I know, right? I call bullsht

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lol!

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I like milk and did not want to stop drinking it. Did some research and decided that the problem was probably pesticides and herbicides. Moved to organic milk and dairy and organic veg. Luckily in the UK meat has less in the way of additives than North America. This is not a recommendation. Just what I am doing.

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Oh dear I was just reading of your upcoming surgery bass...hope all went well with it!! Please don’t feel the need to reply to this.

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Thank you my very good friend!

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What helps you is to keep calm. If you belive in b1 it will help you. That is called the placebo effect. As soon as something else is having your focus you might get distracted/worried/tense and you are not calm any more and get symptoms.

Feel free to read my posts

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B1 is no placebo effect. Although stress plays a major part in every disease especially in Parkinson's (personal experience), B1 has cured me of many Parkinson's symptoms (also personal experience) including stress. Thinking positive is great, but that alone has not worked for me.

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Well you could lack b1. It is often mentioned that you use a lot of b1 when you are stressed. So in that way it make sense :-)

To think positive is not the same as being calm.

I think that you can get stressed if you force yourself to be positive. Calm is a neutral feeling. With close to no feelings and no thoughts. Only sensing: smell, skin, pictures, sounds. But with this come a deep peace of being satisfied.

It is a very big difference - in MY world.

You can be happy and positive and very stressed at the same time.

Positivity can help you with hope when you are ill. And make you stay on the treatment even if it is bad in some way. But positive people get ill as well as negative persons. It took me a while to understand this.

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I'm lacking much nutritients mainly dopamine. The point is calm or positivity or stress fighting techniques alone have not reversed symptoms for me, but B1 has, in conjunction with other things. Believing alone will not work it must be coupled with action. My cells need B1 to carry on their work properly (this is proven experimentally, not placebo). Try giving your patients B1 and see for yourself, or you can try for yourself. Parkinson's is not a disease that's cured by just exercising calm, that's silly of you to state that, with all due respect

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By the way I was member of a yoga group for 12 years and took 6 lesson levels in meditation by way of personal monk training. That type of mental training works wonders in the life, I agree 😊. But B1 not placebo. The group is

anandamarga.org/

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Took C/L and B1 to no avail for a month just gave me a splitting headache 🤕

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My thoughts ,for what they're worth pal, is that Thiamine's method of action is possibly similar to conventional meds, in particular, Dopamine Agonists, and therefore the experience is also similar ie. it takes time to reach the expected level/ it takes time for the levels to fall when withdrawn/ it's difficult to get the right dose/ in my case it triggers the same biomarkers that tell me drug levels are rising or falling, If this is the case, and I do mean 'if' (I have a science/diagnostic background BUT in no way am I qualified to give advice) then fluctuations of symptom control will sadly be a feature for some.

However, I also suspect that the regular meds we take in conjunction with B1 are hindering folk achieving success. I personally experience side effects when I either increase or decrease my meds, and considering the main side effect is a worsening of Parkinsonian symptoms I have to work out whether a crash is due to too much or too little medication. To support my point, I believe some folk have been able to reduce their prescribed meds.

Have you reached an upper limit where you 'definitely' feel worse? And do you know the minimum amount when you get an improvement, however small? If you do then the optimum dose should lie between the two. This should narrow the number dosage amounts to trial, then it's easier to think of sticking at a most likely dose for longer to see if you need more time to adapt. Also, it frees you up to look at diet etc as you yourself suggested.

My minimum is 1500mg and though not 100% certain, my upper limit seems to be 2000mg. I've got some 250mg B1 hcl and my plan is to trial 1500mg for 1/12 and if need be up to 1750mg. I believe my own sensitivity to psychoactive compounds may mean my initial negative response to 2000mg may become positive with a less gung-ho titration.

A final thought, going back to the theory that B1 acts like conventional meds, it may be advantageous to take the dosage as we do our prescribed meds. For example, I plan to take my 1500mg as follows, 500mg at 6.00 am, 10.00 am and 2.00 pm, thus minimising any potential for a 'spike' or 'crash'.

Good luck!

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Niggs. You’re a star for that! Thanks a lot. I think what confuses me is that I can tootle along for 2 months on a particular level of B1 and stable meds but then the protocol somewhat collapses. This then leads me to wonder ‘why’ of course. I think that I might leave off B1 completely for a month or so and see what difference this makes. Then I’ll titrate up if I definitely feel worse without it. Where are you in UK btw?

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That's exactly what's been working for me lately. After about 8 months i decided to spread out the 4 grams I take and its giving me better results.

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Like you Jeeves I have been adjustingB1 dose for months now. In my last email to the wonderfu Dr C he said I had 'lost my parkinsons face' and my pull test was fine too, he recommended i start siminet- after 5 month wait for neuro i have now been on madaparr for 3 weeks. I now walk near normal and can go in and out doors with no issue etc.

I no longer walk like a penguin or have a poker face!

I started on 3g of B1- it worked wonders but dose was too high to sustain. I am now on low dose but once madapar is regular i will up dose but i believe my correct dose is 500mg or less. I found that i would be ok for 3-4 weeks then symptoms would worsen. I also believe that a bad day is just bad day if just one day- we all hv baddies for no reason. I am going to have fasting periods each day e.g just eat in 8 hour window and keep to healthy med diet- i have gone vegetarian too.

It is amazing to become normal again i have struggled with getting adjustments right but with Dr C's selfless work and advice from HU members i feel confidant in moving on. So a big thank you to everyone.

Good luck Jeeves keep trying n listen to your body as Dr C says you know when it right.

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Hi, what dose of Madopar have you started on and when do you take it?

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Yes, the B1 journey is perplexing and frustrating at times. I definitely can not tolerate a high level (500 or above) and have tried injections, bulk powder, and capsules. I have had longish runs of feeling great with improved focus, arm swing, handwriting, and smell followed by a crash after about 4-6 weeks that leaves me feeling terrible. My system is not able to process that high does effectively. I just recently started on 200mg HCL after discontinuing for a couple weeks. We’ll see if this is my magic #. The worsening of symptoms is scary.

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LMl,

Perhaps you could just skip a dose or two at the very first and itsybitsy inkling of symptom worsening or maybe you could try taking weekends off. Let your imagination go to work and you will very likely figure out what it is going to take to even out your response to HDT. I'm just very happy for you that you are a responder!!!

Art

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That is the truth Art! I am happy about that too... I am going to give the 200 a go for a few weeks and gradually up by 50. Armed and ready! I am very interested in finding my ceiling and am thinking that starting low and taking my time will be better for me. Reading the FB frustrations has made me a bit sad, because I dont think many are giving the B-1 time or thought needed for success. Dr. C attests that those who are Angelo Saxon seem to require a lower dose for effectiveness to be seen. (They need your guidance!) but the doubters are doubting. Creative thinking and open minds are necessary because this journey is not easy (ever) but worse if you keep your mind closed. Thanks for the ideas!

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I don't know what "FB frustrations" are???

Art

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FaceBook, I think...

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Thanks, , Jim! I am not aware of whatever frustrations are on FB because I no longer have a FB account,

Art

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Yes, FB is ugh! Roy P. Started a group for high Thiamine. They need your level mindedness.

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I'm booked here for the moment and I won't do FB any more so matter settled! 😊

Art

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😂 I hear u friend.. FB could be a full time job. (Always love your insights)

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Yeah fb does need an Art.

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I've been on, and manipulating B1, MP/L-dopa, plus a few other supplements for a year. B1 keeps me ambulatory. While my gait is a bit off, I can walk without appearing drunk. When I'm off B1 I stumble, waver, and sway. I have had PD take hold over 10 + years. Everything came to a head last year.

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I seem to have more anxiety and burning pain??

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