This neurologist will support your Thiamine B1 protocol...

[Pa-zzi69]

from Italy !….

Dottore Roberto Fancellu is prepared to provide ongoing support of your Thiamine B1 protocol by e-mail, but at one condition: that you first allow him to assess your Parkinson in the context of an in-person consultation at the San Martino Hospital in Genoa, Italy.

Dottore Fancellu has practiced neurology for 22 years and treated patients with Parkinson for 20 years. He has been associated with Dr Costantini’s Thiamine B1 protocol since the start of its development in 2011. He is fluent in English. On June 7, 2019, in the presence of my wife, he tested me to confirm my Parkinson [no other tests], then wrote a prescription to double my Thiamine B1 dose to 1g and suggested a future increase to 1.5g. The consultation lasted 50 min and cost 125 euros.

You may call [phone] at any time‬ for an appointment, only on a Friday between 2 and 4pm. You may have to wait for an English speaker to come to the phone. The doctor's e-mail address is [e-mail]

The logistics of arriving to the hospital, then to his office, are complex enough that we recommend you arrive in Genoa the day before. We were satisfied with our night at Il Giardino di Albaro, tel [phone], ilgiardinodialbaro.com 115 euros for two, including breakfast. Genoa is a large metropolis and this hotel is relatively close to the hospital, a 10-15 min drive [when you know the area] to the entrance of a large medical campus. Forum member LuckyLuke lives in the vicinity and is a patient with Parkinson of Dottore Fancellu. He has volunteered to address your logistics questions at healthunlocked.com/user/LuckyLuke/

And while in Italy, consider a 6-day $800 class in Parkinson Therapy, in English, at the non-profit European Parkinson Therapy Centre in the spa town of Boario Terme, a 5-hour drive North of Genoa, in the scenic lake region of the Southern Alps. Request a detailed illustrated account of my recent session there at [e-mail]

[Xenos]

Thanks a lot for this documented, practical presentation Pa-zzi.

[Goldencbc]

Thank you so much for this information.

[AngloAmericanGothic]

Thanks for this info. My husband and I are discussing this, and I hope he will choose to go.

[Gioc]

If you can spend some time visiting Italy, you can discover the history of artistic beauty linked to our spiritual nature, i.e. a point of view that transcends materialism.

And after all, the food is very good, as is the wine.

uffizi.it/en/the-uffizi

[M1tz1 in reply to Gioc]

My son and daughter-in-law are visiting Italy from South Africa now, GioCas. He worked in Imperia for three years and is showing her around. Highlight was the Andrea Bocelli concert!

[Gioc in reply to M1tz1]

Hi, Mtz1

It is not uncommon for amateur opera singers to find themselves here at the pantheon in Rome where acoustics is ideal for singing even without a microphone. Here is a version of a famous song by Bocelli:

youtu.be/-p4FTC6OW_o(Not working as expected?)

[M1tz1 in reply to Gioc]

He sang, this time, in his hometown, Lajatico west of Florence. Thank you for sending me a recording. Many blessings.🙂

[Gioc in reply to M1tz1]

I hope they were fine. Bocelli is very exciting. They are always welcome .👍🙏

[M1tz1 in reply to Gioc]

They're returning home soon. Sad for them but I'll be glad to have them safely back. Thank you GioCas. Blessings.

[MCC950]

Thank you so much, Pa-zzi69, for such wonderfully detailed information. You left nothing out.

I will never be able to convince my husband, but I sure hope someone else can benefit from this information.

He has always been very nervous traveling anywhere outside of our local area, and especially now.

He is in the early states of PD with hand tremor being the only obvious symptom. He’s very athletic and always exercises...we hear that’s a big plus.

His neurologist put him on Rasageline, but, after 3 months, I don’t see any improvement or change in his tremor.

I’m afraid if it persist the neuro will add carbidopa/levodopa.

On the other hand, our family doctor feels that taking

Vitamin B1 (1gram 2 X day) along with Mucuna (natural dopamine) is a much better choice.

She is also giving him intravenous glutathione every 4 weeks,

with NAC (N-Acetyl Cysteine) 1000 mg(2X day) which turns into glutathione.

If he takes Mucuna he would have to stop Rasageline. I hear they do not mix.

What other meds were you taking when you saw Dr. Fancellu. Did he say vitamin B-1 will do the job alone, or did he say it had to be taken with what meds, in order to work.

What improvements, if any, have you had since you applied his recommendations?

Thank you

[glenandgerry in reply to MCC950]

Wow your family Doctor sounds amazing. In which country do you live?

[MCC950 in reply to glenandgerry]

USA

[Erniediaz1018 in reply to MCC950]

What state?

[Despe in reply to MCC950]

My husband's Vanderbilt MDS prescribed Azilect. He was very receptive into my husband taking MP but he prescribed Lodosyn (carbidopa) to help MP be more effective. He didn't tell us that Rasagiline and MP are not compatible.

[MCC950 in reply to Despe]

Dear Despe, I have an update on the Rasagiline and Mucuna....

We just had another visit with my husband’s neurologist. After deeper research, she concluded that it was perfectly OK to take Mucuna Pruriens with Rasagiline.

The only problem is no one will guide us about how much Mucuna to take.

So, we are following the instructions on the bottle. The indication on the bottle reads:

325 mg (standardized to 15% phytochemicals (50mg)....not really sure what that all means ...it’s rather confusing, but we have started taking one a day of what I believe is the smallest dosage.

It’s only been a few days and there is only a very small improvement in the tremor. Maybe it takes more time or we need to increase the dosage. Don’t really know.

[Despe in reply to MCC950]

Hello MCC. Your neurologist and mine are right. I double checked with him about Rasagiline and MP and said it is safe to take both.

What brand is your MP?

[MCC950 in reply to Despe]

I’m so sorry I didn’t answer sooner, Despe. Please forgive me. I been so busy with so many nuisances and get easily distracted. I’m new to these threads. My husband was only diagnosed about 3 months ago, but I want to make sure I read every bit of news here, even if often I feel confused and overwhelmed by all the information. In any case, I’m glad i found your message.

Yes, at first our neurologist didn’t want to give me an opinion, but after researching it she said it was perfectly fine to take Rasageline and Mucuna together.

I’m just learning about Mucuna and, after hearing all the bad side effects of Carbidopa/Levadopa, I don’t want my husband taking it, so Mucuna sounds like a better natural alternative, to me.

The only problem is I don’t know how much he should take and how often or whether or our brand is any good.

He is using VITACOST Mucuna extract 334 mg. He take 2 per day.

It is so confusing to figure out the right dosage when the Indications show 334 mg but then confuse you saying it has Mucuna seeds standardized to 15% phytochemichals (50 mg).

I don’t know what exactly all that means?

Is it 334 mg, 15% or 50mg.

He also takes 1,500 of Vitamin B-1, on the recommendation of our integrated family doctor, who is simply amazing and will always opt for a natural remedy verses pharmaceuticals.

Thanks again for your interest.

What is the brand of Mucuna you use and how much of it works for you?

[Despe in reply to MCC950]

Hello MCC,

Aren't we all confused when we start educating ourselves on PD??

If you multiply total mg 334 X 15% you get your L-dopa mg which is 50mg. Two per day means 100mg total L-dopa. I am no doctor, just observing my husband's reactions to different non pharmaceuticals. Based on my personal experience, 100mg of Levodopa per day is not enough. It all depends on how your husband reacts especially his motor symptoms.

Husband is using NOW, 2 capsules (120mg L-dopa), 2 1/2 times a day. In addition, MDS at Vanderbilt prescribed just Carbidopa to aim Levodopa's absorption (more L-dopa reaching the brain), but he takes half a tablet of Carbidopa with his two MP capsules. At bedtime, he takes 1/2 tablet Sinemet with one MP capsule, no additional Carbidopa is needed as it is in the Sinemet. He is also on Azilect, 1/2 tablet a day.

Another good MP is TATTVA'S HERBS. He has been using them both with excellent results. TATTVA'S MP L-dopa is approx. the same as NOW's.

Hope it helps. If you have more questions, please ask. If you search this site, upper right box "Search HealthUnlocked" there is abundance of information regarding MP.

[MCC950 in reply to Despe]

Thank you for your reply, Despe and for helping us figure out how to calculate the amount of L-dopa. I guess then 100 mg is not enough and probably why my husband’s tremor is not any better.

Does your husband have tremors now?

[Despe in reply to MCC950]

Yes, he does but are not constant, they are intermittent. Having said that, Levodopa reacts differently for different patients. Some people's tremor improves while others' doesn't. Levodopa basically improves motor symptoms.

All PwP should add Vitamin D3 to their list of vitamins/minerals.

[MCC950 in reply to Despe]

Oh yes, he takes 4000 units of Vitamin D3 per day and so many other supplements, i lost count, plus intravenous glutathione every 6 weeks. He has always been an avid exerciser and continues to be, but nothing, so far, has improved hand tremors.

[chartist in reply to MCC950]

MCC950,

Does you husband find benefit from the intravenous glutathione every 6 weeks, if so can you explain what the benefit('s) is? Also why only every 6 weeks? Seems like a long time between dosing.

Art

[MCC950 in reply to chartist]

Hello Chartist,

It doesn’t help his tremor, but he says it gives him a good sense of overall well-being. I hear some find temporary relief from tremors.

I guess it depends on the patient. Glutathione is the master antioxidant produced by the body, only...it detoxes the liver of all toxins, including heavy metals. PD patients typically are extremely low in glutathione. Taking glutathione by mouth is useless so, taking it intravenously is the best method. He has it every 6 weeks because he hates being pricked frequently, so, in between, he supplements with

N-Acetyl cysteine 1000 mg (2 X a day).

N-Acetyl cystine is an amino acid that turns into glutathione. Wish there was another less invasive methods of supplementing that is just as affective as the IV.

I hope this info helps you. Let me know if you have other questions.

[chartist in reply to MCC950]

I see that your husband is taking 2 grams of NAC per day and the intent is that it will increase his glutathione serum level as adjunctive treatment to his intravenous glutathione that he get's every 6 weeks.

In the following study they gave the subjects NAC at 1.2 grams / day for 4 weeks and then 2.4 grams / day for 2 more weeks. The results showed that serum glutathione actually was reduced after this treatment and that the level of oxidized glutathione increased which the people who did the study determined was because NAC, at the dose used (which is similar to what your husband is taking), actually was working as a pro-oxidant! Just the opposite of what was expected. I used NAC at 2.4 grams in an experiment and over the period of a month it really started to bother my stomach and Park_Bear recently let me know that it was likely caused by the low pH of NAC capsules.

The negative to this study is the small size, but I have read similar studies with similar effects even though NAC is frequently mentioned as a precursor to glutathione. I hope this is not working against the intravenous glutathione.

integrativepro.com/Resource...

By comparison amla in a recent human study at just one gram/1,000 mg per day for 12 weeks was able to increase the glutathione serum level by over 53% while showing significant anti-inflammatory effects in the supplement group and acting as a highly potent antioxidant itself. It also increased another potent natural body antioxidant called catalase. Here is a link to that study:

ncbi.nlm.nih.gov/pmc/articl...

Art

[MCC950 in reply to chartist]

Hello Chartist,

Thank you for sharing the research on NAC and glutathione....I read the links over and over again. It’s all news to me and a little over my head. We were just doing what our doctor instructed us to do, but I’m going to forward your comment along with the links to our family doctor and ask her what she thinks. One can never be too sure. I want to make certain she didn’t overlook something. She has always been good about reading anything I send her and, give me her opinion.

What kind of glutathione therapy or NAC are you on?

[chartist in reply to MCC950]

In the post I wrote about the herb amla in its extract form, in the randomized double blind placebo controlled human study that I linked to in that post, amla was shown to increase serum glutathione by over 53% in 12 weeks. I am taking amla at a higher dose than was used in the study, for other purposes.

healthunlocked.com/parkinso...

Art

[Despe in reply to MCC950]

Has he had the D3 test? Did the doctor recommend 4000 IU a day? Lost count myself of all the different supplements my husband has been taking.

Are his tremors constant?

[MCC950 in reply to Despe]

Despe,

I searched through all the records for any Vitamin D3 tests. Unless I’m missing some blood labs, they were done yearly, until 3+ years ago. Since they were on the low end (44) and the doctor wanted better results (between 60-80), she recommended 3,000 IU per day.

I think he decided, on his own, to take 4,000 when we heard a resident of Alaska say that in Alaska the state encourages people to take at least 10,000 IU.

As far as his tremors...If he is active and moves his hands, his tremors are almost absent or slow down considerably, but as soon as he is at rest or sitting they are much more pronounced and continuous.

He has had two classes of “dancing for Parkinson’s”...hoping that will help.

We met a man there, who swears by these dancing classes...he says he is 90% better after only 10 classes and beside Vitamin B12 and CoQ10, he takes no meds, but keeps himself very active walking and bicycling.

Also, We are reading the book “Fighting Parkinson’s and Winning” and following the author’s diet, messages and meditation recommendations.

Trying to do all we can to beat it. For all those suffering from this cruel condition, my prayers are that you don’t slow down, never give up fighting it and think positive, determined with a view to recover.

[Despe in reply to MCC950]

A M E N to all that you wrote!

My husband's D3 test results are similar to yours but Dr. Mischley recommended 10,000 IU/day.

Tremors at rest are Parkinson's symptoms although not all PwP have tremors. My husband's tremors are not constant and when he is active doesn't have them. He worked in the yard this evening for about 3 hours and had no tremors working outside.

I'd like to purchase the book "Fighting Parkinson’s and Winning" although I don't have time to read. . . I have more books and haven't had a chance to finish them yet.

I guess we have to rise to the challenge. . .

[maryalice]

What if you live in the USA. Will he do your first visit over the internet?

[Pa-zzi69 in reply to maryalice]

No, unfortunately.

[LAJ12345]

Oh, I would love to get my husband there but I fear the trip from New Zealand would be too much for him.🥺

I love Italy.

[lipsticklouli]

This is the most wonderful news! My husband and I are going to Florence and Tuscany in Oct for 10 days. We live in the state of New York in the USA. I will be calling/emailing Dr. Fancellu when the weekend is over and his office hours start up again on Monday......to see if this good Dr. can hopefully (we pray) fit us in on the Friday we are scheduled to be in Florence...on the 11 of Oct. We can easily take a three hr train ride to Genoa on that Friday to see him if he can fit us in. Oh how we hope and pray. From my understanding of your email Pa-zzi69, the Dr. only see's patients for this B1 agenda on Fridays only, correct? I thank you so much for this information. We will be in Italy for one friday only...Oct. 11...I pray he can fit us in, like I said above. Thank you once again for all this wonderful information! Louise Scarpa who is writing for her husband John.

[Foodteacher]

In reading the original post it says that phone calls are only in Friday at specific times, so check it again. I sure hope you can get into see him!!

[lipsticklouli in reply to Foodteacher]

Hmmm, I read again and I still find it confusing. Call Fridays between 2-4 for any appt time...or call for appt time any time...but he can only see you Fridays. Hopefully Pa-zzi69 can help me out here and clarify. In the meantime I have emailed the doctor today to introduce myself and hopefully work something out for us w hen there. Hoping and praying over here.

[LuckyLuke in reply to lipsticklouli]

You can call anytime, the appointments are scheduled only on friday

[lipsticklouli in reply to LuckyLuke]

Thank you so much. I am calling right now.

[lipsticklouli in reply to LuckyLuke]

Hi LuckyLuke, I was very fortunate to get an appt this am when I called the dr. in Italy. We live in the US. We are seeing him on Oct. 11. We are very thankful. I saw that you could help us with the logistics once we arrive. I was told when talking to the office person, Bldg. 40....Floor 0. Is there more you could help us with? Or is this enough? I want to make certain 100 per cent of course, we get to his office once at this hospital. We will be taking either a train from Florence to Genoa early that day....appt is at 3. OR we might even consider a private driver...English speaking... to take us to Genoa....to make sure we are taken to the right place...rather than a taxi driver from the train station...who might not understand us. We will make that decision later. However, do we need to know more about the logistics? Thank you so much in advance.

[LuckyLuke in reply to lipsticklouli]

Hi,

no, no need to take a private driver from Florence. Just take a train from Florence SANTA MARIA NOVELLA train station to GENOVA BRIGNOLE train station. You can book online trenitalia.com/ or at the train station directly the same day. Once you're out of the train station there are a lot of Taxi, just in case you cannot find someone speaking english just prepare a sheet of paper and write your destination in italian so the driver can understand correctly. OSPEDALE SAN MARTINO - PADIGLIONE 40 the taxi will be able to arrive in front or very next to padiglione 40 building. Taxi ride will be very fast, the train station is close to the hopital, no more than 10 minutes by car and you will pay about 10/15€ for that (taxi in Italy are quite expensive considering the short distance). Once you enter the building stay on the entrance floor which is floor 0 and cross some glass doors to enter a long corridor, find the nurses reception and they will address you to Dr. Fancellu visit room which is on the same floor and corridor. You will do everything on that floor: 1. acceptance in the nurse reception 2. visit 3. back again to the nurse reception for payment and invoice. You can ask the nurses if they can call you a taxi to go back to train station or they will address you where to find taxi inside the hospital if needed. Hope this help. if you need further help just let me know

[lipsticklouli in reply to LuckyLuke]

THANK YOU SO MUCH!!! Such help you have given us! OK, decision made...no private driver. Train (which was our first thought) to Genoa that morning. Just hoping to get an English speaking driver. But if not...you have written it all out for us! I could never thank you enough! For now....I think I have info we need! If I need more I will message you again. Graci Graci Graci!!

[Fb41445 in reply to LuckyLuke]

Hi LuckyLuke

Thanks for all this valuable information. Me and a friend who’s husband has PD are also scheduled for oct 11th mine at 2pm and my friends husband at 4. We are traveling from Boston for this special trip and so appreciate all this information!! My last name is Tarantino and my friends husbands last name is Hampton. We look forward to visiting with the Doctor.

[lipsticklouli]

Hell Pa-aai69. I thank you so much for your great news on this doctor. I emailed him today introducing myself and hoping to get my husband in to see him in Oct when we will be in Italy. We will be in Florence and it's a three hr train ride away to Genoa.... we are more than willing and able to make by train. I'm a bit confused on one part of your info. Is he only seeing patients on Fridays...between 2-4? Or is that the scheduled "time" we are to call his office to see if we can schedule an appt for any day? I'm a bit confused. Could you help with that info once again please? I'm so hoping he can see patients any day of week which would give us a bit more days to choose from while in Italy as our days are days there are only 8 full days. Thanking you in advance. Louise Scarpa

[lipsticklouli]

Thank you again...we are so thankful. We were able to get an appt Oct. 11 for my husband...the only Friday we are in Italy...and he was able to see us. Thank you very much.

[ion_ion]

Still, it was much better when dr. Constantini helped us without being necessary to travel such a long distance. Even he wants to charge some fees he can do it online.

[LuckyLuke in reply to ion_ion]

He just can't and will not. I'm a patient of Dr. Fancellu since 2015 and he's a very kind and helpful person. I've paid only my first visit for B1 when I became his patient, then I've always done free follow up visits through the SSN (Italian national health system) he never asked me to pay for private visits like other neurologist did before I knew him for follow up visits. He's overloaded because of his full-time working at the hospital (like most of doctors working in public hospitals in Italy) he follows many patients with different neurological desease not only PD. He just don't have time to do like Dr. Costantini did. Dr. Costantini worked in a small clinic and was retired in the last period, so he could do email consulting many hours. Dr, Fancellu is a 46yo doctor in the full of his working life and a serious doctor as he wants to evaluate patients in person at first. Also he's a Neurologist so he will never prescribe other than approved meds for PD and he always told me I can try the supplements I want but he cannot give me any medical advice about. He started the B1 protocol with Dr, Costantini and help him develop and this is the only supplement he's prepared to give advice about. So if anyone is searching for advices about Mucuna, CBD or any other type of supplements he will not give any advice about, only official meds and B1. That's it.

[Fb41445]

HiLucky Luke

I have an appointment with Dr Fancellu on oct 10th. Its difficult communicating with his office since his staff doesn’t speak English. What should I bring doing now to prepare for my upcoming visit? I’ve started taking 500 mg of thiamine but only in the morning. The only difference I’m noticing is that I occasionally get lightheaded. I’m not taking more than 500mg to wait for the doctor to recommend the proper dose. Besides all this and gathering medical notes from my present neurologist is there anything else ?

[Erniediaz1018]

Headline news 😃 11 months later 🤪where have I been? Thank you very much