Follow up on B1 journey: What an... - Parkinson's Movement

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Follow up on B1 journey

nellie58
nellie58

What an interesting, annoying and time consuming disease Parkinsons is!

I have been injecting hubby with 2mls Vit B1 twice a week since meeting Dr Costantini on 5th June. Results have been very mixed and certainly he has not had the dramatic improvement that some have noted here. One day, two weeks ago I videoed him scrambling eggs and talking animatedly and I of course thought joyously that this state would continue and sent the video off to family victoriously. It works! Yay! I pronounced with glee.

Sadly the very next day he was much worse. He had started freezing badly and was unable to get out of a chair or bed with out help. His balance was so bad that he had a few falls. The last week has been hell. Last night he took a Sinemet tablet and when it kicked in he stood up got something to eat from the fridge and then sat down. Within minutes he froze and needed help to stand up and get put to bed. Half an hour later the meds kicked back in....so strange. Today was injection day and we tossed it around as to whether we continue or stop the injections for a while. Hubby decided to push on with the B1 and today has been a good day for him. His balance seems much better and no freezing. He is starting Atremorine again in the morning...we ran out a month ago and I didn't reorder hoping the B1 was enough. It was doing a great job for the last 18months making the sinemet stable and long lasting and we took it for granted. Hubby has been on Sinemet for far too long and it works pathetically for him.

Sorry for the rant but it gets really frustrating and scary sometimes. I bought the vials of B1 through the website suggested by Dr Costantini and they arrived without a problem...12months supply!

I will update again soon..

53 Replies
oldestnewest

hi Nellie58,

For my experience with the b1 I must say that it has never replaced the levodopa, and the dr Costantini has never advised me to remove or reduce levodopa or other medication, since this is very important and according to the gravity of the brain injury. In my experience it is important that the ldopa is well assimilated even if you use the b1 that will not bring to life the dead brain cells.In my case the dose of ldopa has always been the same for two years and only now I am reducing a very little with success. Even if I eat protein do not assimilate the madopar well and I suffer with increased stiffness.

Gio

nellie58
nellie58
in reply to GioCas

Hi GioCas

He hasn't reduced sinemet since starting on B1. We are hoping once he starts again on Atremorine then the Sinemet will be more stable and last longer. Unfortunately in the last 5 years Sinemet puts him to sleep so he only takes it at night now. ( Usually between 12 and 2pm) 2 long acting tablets. It is not a perfect solution because he spends his daytime low on dopamine but he is awake and can usually function ok. It is such a difficult journey and we are really hopeful B1 will help him. Thanks for reply.

you mentioned that he was scrambing eggs and that he was worse after he got something from the frig. proteins will interfere with the sinemet, and it will be ineffective, until the next dose is due, or maybe even the one after that. i dont eat protein until the evening meal. this is one of the most annoying things, because i love to eat, but i always have to be mindful of what i eat and when. i just want to be able to have a big sandwich for lunch.

it may be as simple as watching his diet. the B1 is probably working after all.

nellie58
nellie58
in reply to jujulini

Hi jujulini

He waited until the sinemet kicked in before he ate and then it was just a pre bed snack, not protein. He only takes Sinemet at night now usually between 12 and 2am because it puts him to sleep. Sinemet worked well for him for the first 20 years and now it is unpredictable. Some people only get 10 good years, so he was lucky. Hopefully the Vit B1 is working and we have just had a bad week.

Kind regards

James4K
James4K
in reply to jujulini

Jujjulini, do you know if protein interferes with B1?

jujulini
jujulini
in reply to James4K

i dont think so, but i havent needed to look into it, because i only have protein with my evening meal, and i dont take B1 at that time.

James4K
James4K
in reply to jujulini

thanks!

I think it's very significant that regarding your husband's Atremorine, you stated, 'we ran out a month ago and I didn't reorder hoping the B1 was enough.' It has been mentioned in Dr Constanini's protocol and also in many of the posts by those of us trying thiamine that we are NOT to stop taking any of our dopamine sources we are already on. The study on AtreMorine says it "increases dopamine levels in average range by 500% – 4000% in 30 minutes, and its effects remain up to 12 hours, improving in parallel the cardinal symptoms of Parkinson’s disease: tremor, bradykinesia, and rigidity.” It sounded like you were disappointed in the effectiveness of the thiamine when I started reading your post, but it appears more likely that the problem was the interruption of his other routine medication. I hope once he's back on his Atremorine he gets a smoother result in his 'on' time.

Yes Marion, I think you are right! I am picking up his Atremorine this morning from my business where it arrived...it has been a long wait for it! Usually it arrives fast but just when we needed it quickly, the courier took for ever 🙄 I will post back soon...

GioCas
GioCas
in reply to nellie58

Hi nellie58

With some adjustments you'll see that the darker days of Parkinson's are over, I'm sure Gio

Despe
Despe
in reply to marion11005

I can find the info on Atremorine, but what is it? Thanks.

nellie58
nellie58
in reply to Despe

Hi Despe,

Have a look on the website to find out the information about Atremoplus (Was originally called Atremorine) I will get it wrong if I try to explain. It works well with people who have been on Sinemet or similar for a long time.

Kind regards

Despe
Despe
in reply to nellie58

Thank you! My husband, the PwP, was very briefly (a few months) on Sinement, without me knowing why the family doctor had prescribed it. At that time, he had only a minor RH tremor. I found out about the med a lot later. . .

Despe
Despe
in reply to nellie58

My husband ordered Atremoplus today. He is on no meds, just MP and vitamins. Will let you know if it will be beneficial although he doesn't have serious problems yet, other than tremors which are intermittent and brief. Thanks again!

Juliegrace
Juliegrace
in reply to Despe

Despe,

If you do an internet search on atremorine all kinds of links come up. I found this one from another forum particularly interesting as it is from MBAnderson who posts regularly here and whose opinions I greatly respect. Please read it all the way to the end.

Also, in all of the dopa-bean research I have done, broad beans (aka fava beans) have generally less dopamine than Mucuna Pruriens.

forum.parkinson.org/topic/2...

Read it to the end.

Julie

nellie58
nellie58
in reply to Juliegrace

Hi Julie, best way to test a product is to try it! If you read my posts you will see that my hubby stopped Atremorine for a month. ( After 18months continuous use) It gave us a good chance to realise just how beneficial it was to his regime. He would gladly drop it as the price is prohibitive but it has been a life changer for him. He is a long time Sinemet user though and as you probably know, Sinemet has a lifespan. Atremorine is extending it thank goodness, which is lucky for us!

Juliegrace
Juliegrace
in reply to nellie58

I was responding to Despe bc her husband is already taking MP, and from what I read, MP is more effective and affordable than atremorine.

nellie58
nellie58
in reply to Juliegrace

She has already purchased the Atremorine so I guess her husband can choose which he prefers 😉

Despe
Despe
in reply to Juliegrace

Julie, thank you for the links. Too scientific and too long for me, so I read the conclusion. Guess it is safe for my husband to give it a try. He still is on MP extract 650mg, 40% L-dopa which is not very much. Adds up to about one gram of L-dopa a day. Zandopa whole bean powder is also on the way. Trial and error method. :)

PS. In my native country fava beans are called "koukia" and are a frequent main dish accompanied by fried fish (only olive oil :) ). They are available from early spring to late spring and were/are picked from the fields still green (turn brown when they dry). My mother used to cook these green fava beans with artichokes in olive oil and lemon juice, a most delicious and nutritious meal. That was spring time, in the winter we still had fava beans but in the dry brown form. My mother used to boil these dry fava beans till soft. We should eat them adding raw olive oil and they were accompanied by lettuce salad and fried small fish. I was consuming L-dopa (and still am) without even knowing what PD and L-dopa are--HOW IRONIC!!

nellie58
nellie58
in reply to Despe

Ohhh...can you post some recipes? We could all do with some of that nutrition in our diets. Can you get the beans easily? I have no knowledge except how extraordinary that somehow they help my husband in the extract form.

Despe
Despe
in reply to nellie58

Oh Nellie, I could do that. I assume you are interested in the dry fava beans as fresh ones are harvested and consumed soon after that. My sister sends those to me from Greece. I put them in a bowl with water the night before I cook them, and by morning they are soft. Then I can easily remove the black line they have on top with a knife. I poor the water I have them in all night, add clean water to the beans and boil them until they are soft and most of the water evaporated. Serve them hot or cold and add olive oil. Voila! :)

Despe
Despe
in reply to nellie58

Nellie, Google Nuts.com and you will find roasted fava beans. My husband discovered the site where you can order all kinds of roasted legumes.

nellie58
nellie58
in reply to Despe

I won't be able to bring them in to NZ most probably but I am heading out to supermarket soon and I will check and see if I can find them! Thanks

Juliegrace
Juliegrace
in reply to Despe

Where are you from? I love fava beans but preparing them from fresh is too m for me these days.

Despe
Despe
in reply to Juliegrace

Julie,

I am from Greece. My sister sends me packages with lots of legumes and other goodies that I can't find in the US. Actually, I cooked fava beans (the dry form) a few days ago, and have them every night with olive oil as a side dish. Husband loves them, too. He tried them in Greece long time ago, loved them then and loves them now. :)

nellie58
nellie58
in reply to Despe

That is so good Despe that your husband has not had to start on Sinemet. If you can work out a way of not starting it then he won't have the withdrawls and down time sinemet users suffer. Sinemet is such a pain now for my husband ( after 25years of use)...without Atremorine it only lasts around 20mins and cuts in and out. With atremorine it lasts hours. It will be interesting to see how you hubby responds to it. Another good thing about it is it is very nutritional....good luck!

Despe
Despe
in reply to nellie58

Thank you, Nellie! I know no harm will come out of using Atremoplus. I know all about fava beans, probably more than anyone on this site. :)

HiddenThis reply has been deleted
nellie58
nellie58
in reply to Hidden

Hi there!

Today has been much improved. He has taken an extra sinemet tablet and resumed Atremorine. He just had a really bad week and I do not think it was due to his B1 injections. We underestimated how necessary Atremorine is for him to regulate sinemet in his system. He had not taken any for 1 month and as one of the commenters on my post pointed out, he will have needed the dopamine it provided.

It is easy to lose confidence when things go badly, but I think he is back on track now. His balance is good again today and he has had no more freeze moments. He is happy and content. Thank you.

GioCas
GioCas
in reply to nellie58

I can perfectly understand all the difficulties of someone like you who helps a PD patient, sometimes it is hard. It's a great job. Brava!

Hello Nellie, You are quite right, PD sucks, I have just contacted Dr Constantini with regard to my Wife's PD condition,he was good enough to reply shortly after and recommended thiamin B1 or the B1 vials, she has been on 3x125 Madopar now for nearly two years when she was diagnosed, she has been very unwell now for a few years, never has a good day,she has had other problems, she ended up in hospital shortly after the PD diagnosis with pneumonia and earlier this year suffered a TIA ( mini stroke) so we are clutching at straws here and would like to give the B1 a try, could you possibly email me the web address where you purchased your vials? We are in the U.K. Many thanks

Regards

Andrew

nellie58
nellie58
in reply to tudorwood

Hi Andrew,

It is not the easiest job in the world being the supporter of the Parkinsons person, is it? 😉

Why not have a little holiday with your wife in Rome and visit Dr Costantini in person? He is a lovely, kind man and very encouraging.

The website and email is below:

info@homoempatia.eu

homoempatia.eu

Kind regards and good luck!

tudorwood
tudorwood
in reply to nellie58

Thank you Nellie, that would be lovely, at the moment she is so unwell with everything that’s going on I think the journey there would finish her off but I certainly wouldn’t hesitate once she gets a bit more energy back,

Many thanks

ANDREW

Norfolk UK

tudorwood
tudorwood
in reply to tudorwood

Good morning Nellie, my Son has just ordered the Thiamine B1 vials and needles from the website you gave me but we are a bit concerned about administering them ourselves, we asked our local GP but they said know.

Andrew

nellie58
nellie58
in reply to tudorwood

Hi Andrew..Dr Costantini gave me a very quick lesson while I was there. I inject into the top of the bottom muscle. It is really easy and I don't even think about it any more. Do you know a nurse or anyone who can oversee the first time? Ask around your friends? I hope you find someone soon...

tudorwood
tudorwood
in reply to nellie58

Good morning Nellie, thanks very much, I’ll have think and ask around, we haven’t received the vials and needles yet, I’ll let you know when we do and how we get on. How is your husband, has he felt any benefit from the Thiamine yet?

Andrew

PS where abouts in the world are you ?

nellie58
nellie58
in reply to tudorwood

New Zealand 😉

Yes! We lowered the dose to 1ml instead of 2. So half the amount in the vial. He is doing really well. His balance is better and no more freezing. Good luck finding someone to show you where to inject. It honestly is easy once you get the hang of it. Take care!

Hidden
Hidden
in reply to nellie58

nellie58,

I am glad to hear that you are finally getting the dose dialed in ! It is odd how some people just jump right in at 3 or 4 grams orally and are good to go while others spend the first 3 or 4 months trying to adjust their dose for optimum efficacy. I realize this can be a frustrating process, but once dialed in correctly, the frustration seems like a small price to pay for the benefits that many are seeing with thiamine use. This is exactly why it is best to stay in touch with Dr. Costantini in these early days to try and minimize the frustration while optimizing the benefit!

Good luck to you and your husband going forward and please keep us updated!!

Art

nellie58
nellie58
in reply to Hidden

Thanks Art,

My husband has advanced Parkinsons and his balance is not good at all. It was a fine line to tell if there was no improvement or a worsening of symptoms. I gave the full dose a good try first as suggested by Dr C. I am hopeful that the lower dose is more comfortable for him. We had some great moments on the higher dose but it was not consistant. Probably because we had dropped Atremorine from his regime. I sent Dr C a video of one of those great, but fleeting moments but I have had no reply. Once I get an improved pull test, I will email Dr C with a video of that as he suggested at the appointment. Otherwise I will keep tweaking the dose if I need to. With Atremorine back on board now my husband is doing great!

Kind regards

nellie58
nellie58
in reply to Hidden

Hi Art

I just read your recent post re B1 and realise I was in the beginning giving my husband the full vial of B1 which is 2ml. Dr C didn't say to only use half the vial and I am sure when he injected him the first time in his office he used the whole vial. Now I am really confused. I will message him to clarify but does that mean I throw away the other half of the vial or can I use it the next time? I imagine it would be unsterile. My husband is having half a vial now anyway because he was not improving and his balance was worse. Now I know why...

My husband also believed he was meant to have the full vial.

Do you have any advice?

Thanks

Nellie

Hidden
Hidden
in reply to nellie58

Nellie,

On dosing it will be best to go directly to Dr. C. I have no clue what he intended when he started out the dosing schedule, but he always says, no question too small plus I'm sure he will appreciate an update!

Art

nellie58
nellie58
in reply to Hidden

Dr Costantini has responded already! He is amazing isn't he? I am so happy to have heard about him through this forum. Thanks Art.

Kind regards

Nellie

tudorwood
tudorwood
in reply to tudorwood

Hi Nellie, just to let you know the Thiamine vials arrived this morning along with the syringes but no needles, so will have to order those separately, so just a couple of questions what size needle do you order and do you keep the vials in the fridge?

We received 30 vials of 50ml and 100 syringes. Andrew

,

nellie58
nellie58
in reply to tudorwood

Hi Andrew, have you been in touch with Dr Costantini? He would have explained that the vials actually contain 2 MLS in each one. Have you been advised to start on 1 or 2 MLS? If 1ml, then you will have half of the vial left over. To open the vial you flick your finger on the top to make the liquid go out of the lid and then snap the vial where the white dot is. It breaks like glass does, a bit jagged sometimes.

I ordered the needles attached to the syringe already. Can your local chemist supply the needles? I will measure ours soon or maybe send a photo. Cheers

nellie58
nellie58
in reply to tudorwood

Hi Andrew

The needle size is .60x32mm. I bought a box of 100 5ml syringes with needles attached. They we only $28NZ for 100 and I bought them off a local website here in NZ.

I am sure you will be able to do the same in the UK.

Good luck!

tudorwood
tudorwood
in reply to nellie58

Thank you Nellie, you’re a star 🌟 will let you know how we get on, have also ordered the Atremorine

Thanks for your post, nellie. We have not noticed much difference in symptoms after about a month on Dr. C's protocol, but still hoping. God bless you and your husband.

nellie58
nellie58
in reply to tbirchf

Keep up the faith and I hope you see improvement soon!

What is the website pls. Thanks

homoempatia.eu

Hi ! Could you give me your source for Atremorine ?

nellie58
nellie58
in reply to KERRINGTON

atremoplus.com

Thanks ! I'm researching the possibility of taking that along with Mucuna Puriens. Thanks too, for your posts.

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