My husband's Thiamine journey update.

[nellie58]

Hubby started B1 IM in June 2018. He had arrived at the lowest point of his Parkinson's life and we were both frightened for the future. We met Dr Costantini and he had his first vial injected by the good Dr. The vials contain 2ml but only one ml of it is B1, the rest is water. (It took me a while to work this out 😉) So he started on 1ml (half the vial) which proved too much. After advice from Dr C and members of this forum, we halved it with excellent results. The last few injections I have increased the amount and yesterday he had 3/4 of the vial. Hubby says he feels great! I think eventually he will have good results with the whole vial but we will wait and see... maybe he is becoming more tolerant of B1?

[jimcaster]

Great news! Thanks for sharing!

[Hidden]

nellie58,

It is very good to hear that your husband is back on track and "feeling great"! I know that HDT has been a real game changer for the both of you, from your previous posts! Yes, I still remember how you were both at a place where it appeared there was no future to look forward to!

I would like to ask a favor of you if possible? Would you write Dr. C a brief email to let him know how his protocol has affected both of your lives? Imagine how you would feel if you were him and you got a note out of nowhere telling you what a positive change your protocol had made for two other people in the world! That would be a day brightener for sure and I would greatly appreciate if you would brighten his day!!

To any other members of the forum who have benefited from Dr. C's protocol, it wouldn't hurt a thing for you to just write a brief email letting him know of your success with his protocol! Dr. C does not charge for these email consults, but he puts a tremendous amount of his personal time into them and it seems like if you can give him positive feedback on your experience, it would be a very nice way to thank him!

Thank you!

Art

[JAS9 in reply to Hidden]

Will do.

[Hidden in reply to Hidden]

And include in your note permission to share/publish

[nellie58 in reply to Hidden]

Hi Art, I have emailed Dr C with our progress, a photo, a video and our love.

[Hidden in reply to nellie58]

nellie58,

That is awesome!!!

Thank you very much!

I think Dr. C will really appreciate this!

Art

[ConnieD in reply to nellie58]

Such happy news! What Improvements has your husband had and do they last until the next injection? Thanks!!

[nellie58 in reply to ConnieD]

Hi Connie, his balance is the main improvement...and strength. Overall he is living a better life.

[ConnieD in reply to nellie58]

Thanks Nellie, so glad he’s doing so much better! Thiamine can really be a game changer! Connie

[Despe in reply to Hidden]

Better yet, Art, donating his campaign is another way to thank him and his team for everything they have done for PwP.

[Hidden in reply to Despe]

That is 100% correct, Despe! Of course if you choose to do both, even better! On that note here is the link for anyone who feels so inclined :

gofundme.com/high-dose-thia...

Art

[Gioc]

IMHO must be considered that b1 is a substance with a restorative effect on brain cells and contained in many foods, as should be considered. It is more a food than a drug substance and works better with all other balanced vitamins and minerals. If I miss levodopa for one reason for the other I immediately feel, otherwise I can stay weeks without b1. It's a big difference. So what's the point of finding your optimal dose in a rigid and precise way? I have learned when to do 2 or three injections or skip a week when needed. It's true that the dose is personal but then you learn how to use it. This also tells us how much the b1 is related to the extent of the lesion. The good news is that beyond the highs and lows after three years of b1 my overall neurological picture has not changed so much, if I could stabilize the response to levodopa I would also much happier. ciao Nellie

Gio

[nellie58 in reply to Gioc]

Hi Gio, my husband has had to remove levadopa almost completely from his regime. He only takes 2 long acting tabs at 2am. They just do not help him anymore. We hope with the one dose that it gives him just enough dopamine to survive. His life is so much better than when he took many doses a day. B1 has helped him much more than I could have imagined. He must have been overdosing on sinemet for years because he thought it has to always be active in his system. The evening are his best time, many hours after sinemet has worn off. It is strange I know. We would not have worked this out if sinemet hadn't become unreliable. I hope you can stabilize your response otherwise why not try without so much? Best of luck, Nellie

[KERRINGTON in reply to nellie58]

Yes, I too have noticed generally feeling better, at night hours after everything has worn off. I tried duplicating it, but can't.

[grandmama16 in reply to KERRINGTON]

When the one dose if C/L taken at night wears off the next day, hubby gets very sleepy but at least he falls asleep well at night. He will awaken easily tho, and gets up much earlier than I do. I have a hard time getting to sleep, even with Ambien which I'm out of so sleep late when finally do sleep. Last night I took Melatonin, but had a high whinning sound in my ears. I thought it was real. It must've worsened my tinnitis. Tonight just Benedryl with a muscle relaxant an hour before that. It's 3 am...still can't sleep. It's just ridiculous. Don't want to bother hubby with my staying awake.

[Hidden in reply to nellie58]

Hi Nellie, my husband also has PD and of late, we feel his Sinemet is no longer working and are slowly weaning him off. Can you tell me how you knew his meds were no longer working? Were his symptoms worse rather than better? His last pills are at 9 at night and he feels good when he gets up. When he takes his pills again at 9:30 am he starts to slow down by 1 or 2 pm. Trying to figure things out is so frustrating. Would appreciate what you have to offer on this.

[nellie58 in reply to Hidden]

Sinemet was great for him for many many years. It allowed him to continue living his life although it wasn't the same. He started taking more tablets as the sinemet became erratic. His balance was not good, he fell and he shuffled a lot. He had to stop driving. He was sleepy and left alone he would have just slept all day. He was apathetic and stopped being involved in life around him. It took a lot of trial and error to get where he is now. We did the vitamin and supplements route with a wellness Dr until hubby said no more. We have tried a lot of things. A breakthrough came when he started Atremoplus. We (family....we all became involved in this when it became obvious that what he was doing was not working and he was deteriorating daily) cut back on sinemet drastically when he started this product and we saw our first glimmer of light. We could see he could survive with a lot less Sinemet. Atremoplus stabilised the sinemet and made it last longer.Our main aim at that time was to stop him sleeping. It has been a long journey and it is not straightforward. Thiamine has restored his balance and made him smile again. Last night I watched him take 4 bags of rubbish in a wheelbarrow down our long drive to the gate for pick up. He was straight and balanced and confident. He could not have balanced that barrow last year. When he came back I said 'wow', but he made no fuss. This is his new normal now and it is so much better than his old one.

[Hidden in reply to nellie58]

Thankyou so much for the info. I hope for your continued success

[Despe in reply to nellie58]

Nellie, my husband is not on Sinemet or any other medication (diagnosed in March 2018). He is on MP, B1, and other vitamins and minerals. At times, I think that maybe he could be better off with meds, but then I read so many negative comments about meds and that make me change my mind quickly about meds. It is so frustrating!

[nellie58 in reply to Despe]

Meds have their place, don't get me wrong. If they were amazing though we would have no need for forums like this. It would be nice if someone could work out what causes this disease. MJF foundation with all that money and so many trials running is still in the dark. We all seem to flounder around clumsily with limited vision looking for a miracle. So thankful for people like Dr C and others that give us hope. His passion and belief in his Thiamine treatment has changed our future. We have benefitted from his hard work and dedication and I expect his reward is seeing his patients thrive.

For the caretakers on this forum it is scary watching Parkinsons progress . It has been exciting for a change watching Thiamine working and knowing the downward progression is halted at least.

[Rajeshjkt]

Hi... my mother is suffering from parkinsons. Her DBS was not successful. She has a lot of problem moving. It would be very helpful if you could tell me the dose of B1 injections... if possible pls send a pic of the injection.

I am a doctor and I would like to contact Dr C... i have just started reading the posts about B1. Could you pass me his email and suggest how I can contact him. I would be forever grateful

Rajesh

My email is [e-mail]

[nellie58 in reply to Rajeshjkt]

Hi Rajesh, you will find all the information you require here: highdosethiamine.org

The vials of B1 come from homoempatia.eu/product/vita...

Kind regards Nellie

[Hidden in reply to Rajeshjkt]

join my facebook group:

"parkinson's thiamine hcl"

facebook.com/groups/2322600... …

Parkinson's Relief, Questions and Answers

[nellie58 in reply to Hidden]

I have 😉

[Rajeshjkt in reply to Hidden]

thanks , will do so

[mannp in reply to Hidden]

You are always one step ahead of me. I was just going to put a reference to your wonderful group on Facebook.

Margie Pyle

[Hidden in reply to Rajeshjkt]

Rajeshjkt,

The following link has contact information, contact form for Dr. Costantini, a comprehensive HDT FAQ page, a list of 80 benefits reported by users and testers of HDT, suppliers and much more!

healthunlocked.com/parkinso...

Art

[Rajeshjkt in reply to Hidden]

Thanks a lot

[Rajeshjkt]

Thanks ... appreciate your help

[Rajeshjkt]

thanks ... appreciate the info and help

[Gioc]

Nellie, I am still amazed by the courage and great stubbornness you have had to come here to Italy from where you are. Truly admirable. I am very happy that it was worth it.

Gio

[nellie58 in reply to Gioc]

We were coming to Italy for a family holiday anyway Gio 😉 We had planned the trip 3 years before. The fact I got an appointment not long before we travelled and on the day we were scheduled to be in Rome was miraculous. Thanks to this forum I had heard about Dr C and his work and our appointment with the NZ neurologist a few months before was so discouraging and negative that it pushed me to look else where for help. Serendipity 💕

[Shannon000]

Great news! Thanks for sharing!