Update B1 and Dr Costantini

[nellie58]

We have the dose right now and hubby is doing great. Our friends and family are amazed by the change. A huge thanks to Dr Costantini ❤

[Gioc]

I am happy, and that’s that 😀

[Lucal]

Glad to read you are doing good... I'll visit Dr. Costantini next thursday in his office in Viterbo. How did you manage to find the right dose ? ( I think mine is still not perfect)

[nellie58 in reply to Lucal]

We just halved it Lucal. Seems to be perfect for now. Say hi to Dr C for us 😉

[KERRINGTON in reply to nellie58]

What was the original dose? Thanks

[nellie58 in reply to KERRINGTON]

2ml 😀

[Toogood]

What dose please...great your doing well..

[nellie58 in reply to Toogood]

The original dose was the whole vial..2mls. Now he has half the vial. 😀

[Toogood in reply to nellie58]

Thankyou for that...

[glenandgerry]

Great news - so pleased for you both. For how long has your husband had PD? My husband was diagnosed 2005 and has been taking the thiamine tablets since April this year. Presently on 3g a day. I think he has improved only slightly (although he doesn't think so). Just had 2 falls this week which is a new thing......very worrying. We haven't been in touch with Dr C as didn't want to trouble him so have experimented ourselves with different doses. Another reason we haven't contacted him is because we've been too busy trying to get hubby's back/leg pain sorted (via the NHS) which is taking an awfully long time, but right now that is far more debilitating than the Parkinson's.

[nellie58 in reply to glenandgerry]

Hi glenandgerry, my husband was diagnosed when he was 41 and now he is 66, so 25 years ago. I inject him with half a vial of B1 twice a week. If you search my posts, you will see it wasn't easy sailing to get to this place. As Parkinsons is forever changing I am sure there will be more hurdles and I will have different complaints...lol.

I am thankful for this forum as our local neurologists have not offered my hubby any hope. There are smart people on here with clever inquiring minds.

[glenandgerry in reply to nellie58]

Thanks Nellie, I agree with all your comments......PD is indeed forever changing. The neurologists my hubby has seen only ever want to add more drugs to his regime. I too am very grateful for the smart people on this site with their enquiring minds. 😊

[nldr18 in reply to nellie58]

Thank you for sharing Nellie. I feel blessed for this forum as well. I started the protocol 5 1/2 weeks ago and I am thankful for and amazed at the responsiveness of Dr. Constantini.

I had an incident yesterday with pain in my hip and knee Which turned out to be arthritis according to the x-rays. Dr. Constantini responded and told me to stop the protocol for five days, reminding me that the effects last. My main symptom that is concerning is retropulsion which has been a little bit better since starting the second month of thiamine. I am, by the way, taking 2 g a day of capsules.

I am so happy for you to learn that your husband is doing so well. May I ask what his main symptoms were, and how they have been affected by the protocol?

I am not yet on pharmaceuticals after six years, and hope that this protocol Will help me to stay off them while feeling much improved. With wishes that your husband continues to feel well.

Natasha

[nellie58 in reply to nldr18]

Natasha that is so good that you are not on pharmaceuticals. Before we found the correct dose with B1 and before our meeting Dr C, my husband was severely compromised. I remember in the last meeting with a neurologist my husband said to him ' I can't get out of a chair on my own any more'. That was actually a code for not being able to get out of a car, or bed or negotiate small spaces, toileting, doing up his pants etc etc. The neurologist just ignored his comment. I knew then we were on our own and we would have to find our own way forward. I am so grateful for this forum. My husband can now get out of bed, dress, put on his socks and shoes with no help. This is thanks to B1 and Dr C. Is it a cure? No. Is it amazing? Yes.

[nldr18 in reply to nellie58]

Nellie, we are all in this together. I am so glad your husband is benefiting from Dr. C‘s miracle. Today I stood for half an hour and never once stepped backwards. And hopefully it will only get better. Look forward to seeing where Dr. C’s research goes. Where are you located? Greetings from New York. Blessings, Natasha 🙏🏻

[nellie58 in reply to nldr18]

New Zealand 😀

[ConnieD in reply to nellie58]

So happy for your husband and you!! Awesome news!💗

[KERRINGTON in reply to glenandgerry]

Stay with it, I've been on since March. I started at 4gm, then tried 3 gm. I tried very hard to feel and think how my body was responding. I would stop taking it for a few days, and did notice a difference, sometimes good, sometimes not good...then I realized that without b1 my balance wasn't great, and wd improve an hour after I took it. I read a lot, and tried reducing my dose to 2 gms where I am now along with mucuna. I'm doing much better, but I'm aware that I must always be ready to make changes when my body reacts differently. Also, I added b complex 2x weekly, neuro magnesium 2x weekly, both taken many hours after the b 1.

[glenandgerry in reply to KERRINGTON]

Thanks Kerrington. How long since you were diagnosed?

[KERRINGTON in reply to glenandgerry]

Started about 10-13 yrs ago, I remember my hand acting weird, but diagnosed about 2 yrs ago.

[Toogood]

❤️❤️

[Toogood]

Just wish it would calm down the shaking.....

[KERRINGTON in reply to Toogood]

Have you tried mucuna, it really helps reduce my shaking by 60 - 75 %. Also a good night sleep helps.

[Toogood in reply to KERRINGTON]

How much macula do you take ...

[KERRINGTON in reply to Toogood]

I take Banyan mucuna 500 mg whole bean with 5-7 % dopa. I take anywhere between 6 to 12 a day depending on pd stress....

[maungwin56]

Good news. Glad to read that. But, I still didn't get it right.

[Cons10s]

I’m visiting DrConstantini, next week in Viterbo. Age 56, no meds. PD 3.5 years. Mucuna and thiamine since April.

Currently on a 20 day vacation through France and Italy, and doing fantastic. (Would not have said that last year) I’ve experienced positive improvements with Thiamine since April, and it’s difficult now to see my symptoms unless you’re staring. I feel i have my condition under control and really happy it’s not running or ruining my life.

Thiamine, Mucuna and a little THC/CBD tincture works well for me.

By the way I’ve flown through numerous airports during the past 2 years with my tincture and never been stopped. I usually keep it in my purse right through security. My friend at SFO said TSA turns their head. Not saying do what I do, just sharing.

[Gioc in reply to Cons10s]

I am very happy! and that’s that.

[TL500 in reply to Cons10s]

what are Mucuna, THC/CBD please?

Thanks

[albachiara2]

Sono Albachiara, ho difficoltà, nonostante il traduttore, a comprendere molti post, ma voglio dare il mio contributo su questo tema della B1 e dire un grande grazie al Dottor Costantini.

La malattia di Parkinson mi è stata diagnosticata all’inizio del 2016, ma i primi sintomi si sono manifestati un anno e mezzo prima.

Sono stata curata dal gennaio del 2016 con una cpr al giorno di requip da 8mg ed una di jumex da 5mg.

Ma i sintomi non motori non miglioravano: gli sbalzi di umore, le crisi di pianto, la frustrazione, l’insonnia restavano invariati ed io non volevo prendere psicofarmaci,né andare dallo psicologo, mi sembrava di combattere giornalmente contro i mulini a vento:era come camminare in un tunnel e non vedere mai la luce.

Poi lessi di questa terapia proposta dal Dott. Costantini e pensai che poteva essere la svolta che cercavo.

Ne parlai alla mia neurologa che mi fece iniziare con 300 mg di B1 al giorno, dopo 15gg. circa cominciai a vedere i benefici. Dormivo, ero più serena, ero meno soggetta agli sbalzi di umore, avevo voglia di socializzare, di “vivere”.

Dopo tre mesi di B1 interruppi e, pur permanendo un lieve beneficio, dopo due mesi ero ritornata come prima, nel mio incubo.

Ricominciai a gennaio del 2018 a riprendere 300mg di b1, ma a febbraio iniziai ad accusare bradicinesia e un po’ di rigidità agli arti inferiori nel fare alcuni movimenti, della qual cosa informai la mia neurologa che raddoppiò la dose di b1 mantenendo inalterata la cura. I risultati sono stati strepitosi, dopo 6 mesi mi sento bene come prima della diagnosi, vivo non in un tunnel, ma in un mondo colorato. Certo non tutte le giornate sono splendide: un dispiacere, un conflitto distrugge tutto, ma so che il giorno dopo è carico di sole e posso ritornare a sorridere

[Gioc in reply to albachiara2]

Traslation of this beatifull success story from Albachiara from Italy too.

“I am Albachiara, I have difficulty, despite the translator, to understand many posts, but I want to give my contribution on this topic of B1 and say a big thank you to Dr. Costantini.

Parkinson's was diagnosed in early 2016, but the first symptoms occurred a year and a half earlier.

I have been treated since January 2016 with a CPR per day of 8mg requip and a 5mg jumex one.

But the non-motor symptoms did not improve: the mood swings, the crying, the frustration, the insomnia remained unchanged and I did not want to take psychotropic drugs, nor go to the psychologist, I seemed to fight daily against the windmills: it was like walking in a tunnel and never seeing the light.

Then I read about this therapy proposed by Dr. Costantini and I thought it could be the turning point I was looking for.

I told my neurologist that she had me start with 300 mg of B1 a day, after 15 days. about I began to see the benefits. I slept, I was more serene, I was less susceptible to mood swings, I wanted to socialize, to "live".

After three months of B1, I interrupted and, even though I had a slight benefit, after two months I had returned as before, in my nightmare.

I restarted in January 2018 to take back 300mg of b1, but in February I began to accuse bradykinesia and a bit of stiffness in the lower limbs in doing some movements, of which I informed my neurologist who doubled the dose of b1 while maintaining the cure. The results were amazing, after 6 months I feel good as before diagnosis, I live not in a tunnel, but in a colorful world. Of course not all days are beautiful: a displeasure, a conflict destroys everything, but I know that the next day is sunny and I can return to smile.”

Thank you very much Albachiara!

Grazie per la tua bellissima storia di successo Albachiara !

Gio

[TL500 in reply to Gioc]

Do you still take Parkinson's medication while good results with B1? Thanks.

[albachiara2 in reply to TL500]

Scusami se ti rispondo con molto ritardo, ma le traduzioni poco chiare mi hanno un po’ allontanata dalle conversazioni. Sì, ancora continuo con i farmaci. Per eliminare il tremore la neurologa ha inserito una piccola dose di levodopa

[TL500 in reply to albachiara2]

Thanks for your reply. How much Levodopa and B1 do you take now?

Are you still improving?

Thanks.

[albachiara2 in reply to TL500]

Assumo per tre volte al giorno mezza dI madopar 100 e 2 compresse di vitamina b1 da 300 mg

[nellie58 in reply to albachiara2]

Wonderful ❤

[Hidden in reply to albachiara2]

albachiara2,

Grazie per il tuo meraviglioso post! Uno dei nostri membri italiani l'ha tradotto in modo che tutti possano leggerlo. Copierò e aggiungerò il tuo post in un'altra area di HU dove più persone potranno leggere dei tuoi ottimi risultati con l'uso di tiamina!

Thank you for your wonderful post! One of our Italian members translated it so all can now read it. I will copy and add your post to a different area of HU where more people will be able to read about your great results from using thiamine!

Art

[albachiara2 in reply to Hidden]

grazie

[albachiara2]

Grazie Gio, accetto con vero piacere la tua proposta

[Gioc in reply to albachiara2]

Emh.. già fatto😀

[albachiara2 in reply to Gioc]

brava

[albachiara2]

grazie easilly per avermi dato la mail del Dott. Costantini con il quale ho condiviso questo risultato

[Gioc in reply to albachiara2]

traslation :Albachiara2.

thanks easilly for giving me the email of Dr. Costantini with whom I shared this result.