Florinda: I met Florinda over a year ago... - Cure Parkinson's

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Florinda

Markbit profile image
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I met Florinda over a year ago through Young Parkies Portugal. At the time, I was dedicated to promoting the therapy and was helping some people implement the protocol. Some recent experiences had already caught my attention that many people are what I call “low dosers,” meaning they respond to doses lower than 100 mg of vitamin B1 HCL, taken orally. So, I advised her to start with that same dose, which she did in September 2023, after seeing the astonishing results of another person’s initial response, Andreia.

I consider that, so far, Florinda has been the person I follow who has had the most success with the therapy, even though she doesn't follow the most common protocol. She started with 100 mg of B1 HCL, which she tried for some time, but she didn’t feel well. At the time, I had very little experience with the therapy, besides my own, and couldn’t quite understand the body’s responses, but I suspected some signs of overdose. I suggested she take a break and restart the protocol, and we began with a B-complex first, as she was already taking magnesium. Since I was taking a B50 Complex at the time, three times a week, I suggested she start with the same B50 complex, which contains 50 mg of B1, B2, B3, B6, and 50 mcg of B12, among other things.

Curiously, the results were surprising and almost immediate. Florinda started feeling better and better, both in terms of motor and non-motor symptoms. She told me at the time that the walks she used to take, which were quite short, gradually became easier. After some dosage experiments, she settled on this B50 complex, which brought her even more improvements over time. Her walks became weekly, with nature hikes every weekend, group trails where she walks 10, 12, or 15 km in stunning places that make us envious on social media. Since then, her sweet spot has lowered, and after some time when she lost the "miraculous" effect the therapy initially gave her, we followed the protocol. She took a few days off to lower the B vitamin levels in her body (I can’t remember if it was a week or more) and resumed with a lower dose—one pill one day, alternating with half a pill the next day (a total of 37 mg of B1 on average daily)—which helped her regain the benefits she had before.

Today, Florinda shared more news. She met with her neurologist, Dr. Ana, on Monday, whom she hadn’t seen in two years due to a high-risk pregnancy and maternity leave, and in the meantime, she was seen by three different neurologists. Dr. Ana was surprised that Florinda was doing so well (she had started the therapy after her last consultation), asked her what she was doing, and Florinda explained the B1 therapy. Dr. Ana congratulated her and told her to keep doing what she was doing! She also admitted that if it weren’t for the Dat scan, it would be very difficult to diagnose her today, as the only symptoms she showed were slight slowness and a rotational movement in her left hand.

For Florinda, this was the confirmation of what she had already been feeling—that the disease had stabilized, and her symptoms had regressed. She also mentioned that she reduced her medication by one Sinemet 25/100 plus half a Sinemet 25/100 per day, now taking one Sinemet three times a day and one Sinemet 50/200 CR at bedtime. With the diagnosis made three years ago, she is now much better than on the day she was diagnosed, and it shows in the photos she shares with us from her weekend walks!

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Markbit
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27 Replies
Gena_Diaz profile image
Gena_Diaz

Graciñas desde A Coruña , Galicia . Eres un santo que tiene que ayudar a otros enfermos de Parkinson porque los médicos se niegan a hacerlo . Creo que la dieta baja en carbohidratos y sin azucar os ayudaría mucho en vuestra cura . Saludos

Gioc profile image
Gioc

Obrigado    Markbit e parabéns à Florinda por esta linda história de sucesso.

Histórias de sucesso são as únicas postagens que eu leria sobre o HU CP.

Saudações da Itália

Gio

P.S. Parabéns pelos lindos parques naturais que tem em Portugal 🇵🇹.

Thank you  Markbit and congratulations to Florinda for this beautiful success story.

Success Stories are the only posts I would read on HU CP.

Greetings from Italy

Gio

P.S. Congratulations on the beautiful natural parks you have in Portugal 🇵🇹.

Markbit profile image
Markbit in reply toGioc

Obrigado Gio 😊

Gioc profile image
Gioc

Obrigado Markbit pelo seu depoimento e pela confiança e esperança que você traz para tantas pessoas também através de seus lindos livros.

Tenho certeza que logo haverá uma cura, o momento é propício.

Vamos estar prontos e em forma para que possamos todos nos encontrar aqui no HU Cure Parkinson's para falar sobre como a vida ainda é linda.

Saudações calorosas da Itália para você e todos os seus colegas e amigos portugueses.

Gio

Thank you Marco for your testimony and for the trust and hope that you bring to so many people also through your beautiful books.

I am sure that there will be a cure soon, the time is ripe.

Let's be ready and in shape so that then we will all meet here on HU Cure Parkinson's to tell how beautiful life still is.

Warm greetings from Italy to you and to all the Portuguese colleagues and friends.

Gio

Markbit profile image
Markbit in reply toGioc

Ohhh Gio! Thank you for your kind words! Greetings to Italy!

Gioc profile image
Gioc in reply toMarkbit

é assim que é!:-)

Jess123dog profile image
Jess123dog

Hi Markbit, thank you so much for sharing this. Can you say which brand of b complex was used and was the b1 in addition to that? I am also having very good improvements currently and I will write my story soon and share my experience.

Markbit profile image
Markbit in reply toJess123dog

Hi Jess, Florinda is achieving her results with the B50 complex from Now Foods brand, She started with capsules, but now changed to pills in order to be able to divide it. She also tried from Lamberts brand and also felt ok, She didn't felt the same way with the same amount of B1 only, so there is something else on that formulation helping her!

Jess123dog profile image
Jess123dog in reply toMarkbit

Thank you so much for this info. Is it possible to follow Florinda on social media do you know?

Markbit profile image
Markbit in reply toJess123dog

I think she will not bother with that. I will send you her profile by message.

Hope-full1970 profile image
Hope-full1970

Thank you for sharing this! Very encouraging!

octonaut profile image
octonaut

Thank you kindly for your post regarding Florinda’s protocol. This is very timely for me. I have attempted a B1 protocol without much success. I read Daphne’s book with great interest, but misinterpreted recommendations, and initiated a way-too-high starting dose of 100 mg of Sublingual B1 daily. Upon further inspection of the starting protocol recommendations, I took a break, then initiated a 3 x week (Mon Wed Fri) regimen of 100 mg SuperiorSource sublingual B1 this past June. I’m not at anything like a sweet spot, but not certain how to optimally increase or alter this protocol After reading your Florinda post, I plan to take a break and then initiate the protocol Florinda has been using.

If I am interpreting correctly, the protocol involves alternating between a full NOW B50 complex tablet and 1/2 tablet daily. (correct?)

IN ADDITION, I believe there is a magnesium component. (?) Markbit — Can you advise which type of magnesium is recommended and what dosage? Any other components?

Your insights are sincerely appreciated. THANK YOU.

Markbit profile image
Markbit in reply tooctonaut

Hi Octonaut! From my experience, and i have been guinding some people, is that most of them get results not with high doses, but low doses of B1 ( I call a low dose 100 mg or less of B1 HCL TAKEN ORALLY, as the same amount ob B1 taken in sublingual form is way more powerful. I believe that is why so many people do not get any results. Some people really get got results from an high dose of B1, but in my case, from what I have seen, almost all the people I follow get results below 100 mg B1 HCL. One of the persons I am guiding is now assimptomatic with 1/8 of a B Complex pill every 11 to 15 days. That's an insane low amount of B1 (each pill of the B complex she is doing has 10 mg of B1, so it's like 1 mg of B1 every 11 days to 2 weeks), but more that that and she gets overdose symptoms, but in fact her symptoms are gone. She started a few months on 50 mg B1 hcl with magnesium l-treonate and the B complex, stayed great for a few days and then overdosed, took breaks and reduced, and then she had to leave the B1 HCL pill and stayed with only the B1 on the B complex. Things that I have learned , some people need low doses of B1 instead of high doses, also it's not only the B1 ( but I believe that is mainly due to the B1) but also other components on the B complex, and also very important, the sweet spot is not something static, but it drops over time, some times drops 50% or more in a matter of one or two months. In my case, I have been on 3000 mg and more, and right now I'm on 200 mg B1 HCL daily. I went to the Gym 4 times this week, yesterday I run 10 Km, today I bike 14 km. I'm 17 years on PD, about 6 years on B1. Hope this helps!

octonaut profile image
octonaut in reply toMarkbit

Markbit - Many thanks for your insights.

It sounds like a starting protocol might be the B-complex (B-50) one per day, plus magnesium l-threonate. Then maybe add a modest dose of B1HCL daily.

Thank you very much.

pdpatient profile image
pdpatient

I have had very good success with this brand here in the USA.

The brand is Life Extension Bioactive BComplex

a.co/d/4vtVoqq

octonaut profile image
octonaut in reply topdpatient

Pdpatient, thank you for your post. Can you advise the dosasge you use? One capsule per day? …. Any other components in your protocol, e.g. magnesium ? Thank you kindly.

pdpatient profile image
pdpatient in reply tooctonaut

I used to take 2 capsules of B Complex per day. I u to take 2 capsules of Centrum Silver Multivitamin per day in addition to the B Complex. I have a feeling that the B2 and B12 components are as effective and perhaps complementary to the B1. B6 is a great addition to the others. No wonder a good Bioactive BComplex supplement is so effective.

But I still needed something extra. And the answer was Gocovori. My life has changed after I started taking it and my need for Sinemet has reduced to half of what I used to take before. Honestly, I stopped taking the B Complex two months ago. But this thread reminded me of the other benefits of the supplement such as mood and energy. I reordered it from Amazon today. I still take the Multivitamin. There is evidence based news that 2 Multivitamins per day is very good for overall health

The only problem is that Gocovori is extremely expensive and I am transitioning to Medicare ( which is a social health care benefit in the USA much like the social programs in Europe) and that scares me. I hope that I find the right plan and get covered.

Hope this is helpful.

Edit 1: Be aware that your pee will be bright yellow in color, but entirely harmless and expected.

Edit 2: I noticed that you are in the EU. Some suppliers from India ship it for about $500 for a 30 days supply. Perhaps that is more affordable and probably my best backup option. The problem I might run into is clearance through customs.

octonaut profile image
octonaut in reply topdpatient

pdpatient -

THANK you for your reply.

I’m very intrigued by Gocovri — this is the first I have heard of it. As dkyskinesia (plus low energy) is my biggest PD complaint, I’d like to find out more.

(Note — I’m actually not in EU — but on Medicare in the states). It seem Gocovri is insanely pricey. Supposedly amantadine Hydrochloride extended release is a less costly alternative. I’ll be quizzing my doctors.

Thanks to you for this insight on Gocovri — and on the B1 protocol. I have some research work ahead of me.

Caa11 profile image
Caa11 in reply topdpatient

helo. My husband was on Gocovri and was able to work with a program called Gocovri Onboard-not sure how this/ if this can work with Medicare.

$20 CO-PAY

Commercially insured patients who participate in the GOCOVRI Co-pay Assistance Program pay $20 per prescription* until the maximum annual benefit is reached.

This is the phone # 1-844-462-6874

If i remember correctly, it has to come through a specialty pharmacy, not just a regular retail pharmacy like CVS. The pharmacist at the specialty pharmacy actually got him hooked up with the program. The Rx comes through Walgreens home delivery pharmacy. I wonder if your pharmacist can help direct you with which plan to use?

pdpatient profile image
pdpatient in reply toCaa11

Thank you.

octonaut profile image
octonaut in reply toCaa11

To Caa11 — Thank you kindly for the advice on Gocovri affordability. … Question — I take it Gocovri was noticeably helpful ?

Esperanto profile image
Esperanto in reply topdpatient

The relatively high dosages of Life Extension Bioactive B-Complex are only partially bioactive! For a short period, this is not a problem, but due to the accumulation that can occur with B6, there is a potential health risk. The daily amount of 100 mg of B6 (5882% of the Daily Value) consists, in an unspecified part, of the safer considered P5P, but also of the non-bioactive pyridoxine HCl, which can be toxic in larger amounts and may cause peripheral neuropathy.

The low-dosed multivitamins from Centrum Silver seem to pose no risk if not taken together with the B-Complex, but they are not bioactive.

pdpatient profile image
pdpatient in reply toEsperanto

Thank you for the insight. My wife thinks that it is safer to take just one capsule a day instead of two because Gocovori is working so well.

gomelgo profile image
gomelgo

this sounds really amazing. Thank you for sharing. I'm wondering if you have any advice for those of us who have not yet started taking meds.

Markbit profile image
Markbit in reply togomelgo

Well, I am following a lady who was recently diagnosed, and was prescribed sinemet 25/100 three times a day. She didn't started, instead, she did started a low dose B1 therapy, after 2-3 weeks, her symptoms greatly improved. It's important to take magnesium and a B Complex with a low B6 < 15 mg, My advise is to start low, with 50 or 100 mg B1 HCL taken orally, increase by 50 mg every two weeks, do not increase if you fell any improvements, but keep the same dose instead.

octonaut profile image
octonaut

Markbit — Thank you kindly for this protocol plan. Question — Is there a B Complex you would recommend? Magnesium recommendation? Greatly appreciate your insights.

Markbit profile image
Markbit in reply tooctonaut

If you go to Daphne's Bryan Facebook Group, "Parkinson's B1 Therapy", in the files section, you will find excelent info about the best magnesium and B Complex. In my case, I take magnesium l-treonate

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