Visit with Dr. Fancellu in Genoa in October

[Fb41445]

I have been so encouraged by all of the posts from PwP using Dr Costantinni's B1 regimen that I've decided to meet with Dr. Fancellu, his counterpart in person. I have seen Lucky Luke's posts and they have been most helpful for logistics and accommodations while in Genoa. I am 65yo, was diagnosed 6 years ago and have mild symptoms. The doctor attributes this to me playing tennis 3-4x week and staying active, although they say the 'honeymoon' years last about 5-6 yrs so I'm expecting they will get worse at some point. I am on C/L 25/100 as needed (usually take it before a match for a boost), and mild doses of Amandatine (Symmetrel), Selegenine (Eldepryl) and Pramopexole (Mirapex), am and pm. Recently I've noticed my body feels more rigid, tremor in my left hand has gotten slightly worse and my balance has diminished slightly. I've been using CBD oil for my body aches My gait has changed and I noticed in photos my facial expression is different. I have weakness in my left hand and my dexterity is not great on my left side overall. My neurologist gave me the 'Push Test' and I recovered taking 3 steps which she said was 'fair' but didn't see any significant changes since my last visit 4 months ago.

Has anyone visited with Dr. Fancellu and followed his recommendations for B1 regimen? Are my symptoms not that significant to warrant a visit? Does he make you get off all meds and just take the B1? Or C/L with B1? How long does it take to see results?

[chartist]

Fb41445,

Dr Fancellu worked with Dr. Costantini on some of his studies as his name appears on some of those papers also so their approach is likely similar as regards B-1. I look forward to hearing how your visit goes!

The push test has proven very useful for Dr. Costantini to determine when you are very close to the correct dose of B-1. He would be looking for "no step back" or up to "one step back" to let him know that you are likely very close to your optimal dose. His preference was to stop other supplements while testing B-1 in order to get a clearer picture of exactly how you are responding to B-1 which in turn would help him to optimize your B-1 dose. He usually kept the meds the same during the B-1 testing period unless he felt he could make a positive adjustment with the CL dose in relation to the B-1 dose. He always maintained that CL and B-1 work synergistically together and felt he could maximize symptom improvements by adjusting the CL dose and B-1 dose together and often times, his patients are able to reduce their CL dose once B-1 treatment is initiated. Another benefit he found is that as long as you are taking HDT/B-1, his patients never had to increase their CL dose, whereas what often happens without B-1 is that the CL dose will need to be increased through years of use and possibly increased to a max point where it is no longer as effective at symptom relief as it initially was. With the inclusion of B-1 to the CL, he never had that problem any more and if anything, there was the potential to reduce the CL dose in some patients.

Here is a link about everything HDT that may be useful for those interested in learning about HDT/B-1 :

healthunlocked.com/parkinso...

Good luck and please keep us updated!

Art

[Fb41445 in reply to chartist]

Thanks for all of this valuable info. I will touch back when I return in mid October.

[Pa-zzi69 in reply to chartist]

Thank you Art, I really appreciate your well formulated instructive write-ups. They motivate me to "follow" you. MarcP

[Dogs3]

Hi chartist.. please could you tell me how to contact Dr Fancellu? My husband has been recently diagnosed with pd but not on any medication yet. He has started on b1 for a few weeks. Would really like to make an appointment with Dr Fancellu. Many thanks

[chartist in reply to Dogs3]

Dogs3,

I'm sorry I missed your post and did not receive a notification of it from the HU Forum, so perhaps you missed selecting it as a reply to my post in which case I would never have seen it.

What I am going to do is copy and paste a post by forum member"""Pa-zzi69""" (Thank you for posting this important information for the members!) who has previously posted the information you are looking for. Here is that post :

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This neurologist will support your Thiamine B1 protocol...

Pa-zzi69

Pa-zzi69•

an

a month ago•32 Replies

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]

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Good luck, Dogs3 and please keep us updated on how you and your husband do with Dr. Fancellu!

Art

[Pa-zzi69]

On June 7, in the presence of my wife, Dottore Fancellu 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. My diagnosis is only 20 months old and my symptoms are manageable enough that I can ignore my neurologist prescription of Sinemet, so I did not seek specific drug advice from Fancellu. He pleaded ignorance when I inquired about Mucuna; he quickly gave an overview of the 3 or 4 classes of drugs, inferring a broad knowledge and ability to help you. On the other hand, on this forum, LuckyLuke is a very helpful-friendly local patient of Fancellu who started B1 injections in January AFTER a drug regimen that he was able to continue [with or without changes, I don’t know].

Ahead of your consultation you may also present your case to Dottore Fancellu at [e-mail] making it clear you don’t expect a consultation from him ahead of your meeting in person. He could let you know if your drugs are not known in Italy under the same name of Amandatine (Symmetrel), Selegenine (Eldepryl) and Pramopexole (Mirapex)

Please take the time to document your visit for the benefit of all of us on this forum on Dear Costantini’s Thiamine B1 protocol.

Amicalement, MarcP

[LuckyLuke in reply to Pa-zzi69]

Hope you're doing well my PD friend!

[Fb41445 in reply to Pa-zzi69]

I look forward to my visit with Dr Fancellu and thank you for the head start tips! My appointment is scheduled for October. I was under the impression that I continue my meds as usual and wait to have Dr F tell me what dosage of thiamine to take. But it does make sense to start now. I dont have bad tremor but do experience rigidity, fatigue and my balance is off a bit I’m hoping the thiamine will help with that. Thank you so much.

[LuckyLuke]

Hi,

I'm patient of Dott. Fancellu he follows me for my PD meds and for B1. He will not stop your medication and you can take B1 with your theraphy. I would start as soon as possible with B1 don't wait to get worse. I've tried both with and without meds all together with Dr. Fancellu. First time in 2016 without meds for 6 months no noticeable improvements, then jan 2019 with C/L and worked since the first injection! If you need help with travel infos just let me know I will be happy to help.

[Fb41445 in reply to LuckyLuke]

Thank you so much. I’ve been taking 500 mg of thiamine orally each morning and I don’t notice anything different. I’m hoping my visit with Dr F will improve my movement. I recently fell. And my muscular strength seems to be diminishing.

[sue2000web]

I have had a video consultation with dr C and am on b1. Have been for 18 months. All good. Slight worsening but negligible . At hosp they say I am still in honeymoon but I have had it for 7 years