Parkinsons Recovery is dedicated to identifying promising new therapies that offer the promise of reversing symptoms of Parkinson's disease. One such therapy will be discussed today (5/23) on Parkinsons Recovery Radio at 12:00 noon pacific time.
My guest is Dr. Antonio Constantini from Italy who uses High Dose Thiamine as a treatment for Parkinson's and other conditions. Join us for my interview with him that promises to reveal a novel discovery.
Dr. Marco (translator): After a medical checkup dose is determined. 1g up to 4g daily.
Host: Why does this work/succeed
Dr. Marco: Thiamin is effective needs biochemical research. One hypothesis cells are not able to function without thiamin.
Host: What can a PwP expect, how quick and how long will it be effective.
Dr. Marco: Early onset PwP, no on off basis, receive 50% effective to total disappear of symptoms relief. Later stages, adding levodopa. Another factor oral, two to three days results start appearing. Injection, results appear in minutes.
Host: other conditions besides Parkinson's?
Dr. Marco: Long list. A number of neurodegenerative conditions. Most all studies published. Google.
Host: Any research published? I will publish links on this blog.
Dr. Marco: Yes, three.
Host: Location of treatment?
Dr. Marco: Their neurologist or physician or through our group. We never experienced interaction but a doctor supervision is recommended.
Host: Cost
Dr. Marco: tablets per year, 50$ ? ; injections 200 euro per year
Host: take thiamin forever?
Dr. Marco: yes but possible to take very short breaks
Host: Doc C, long distance consultation?
Dr. Marco: as time and resources permit, no fee, only wish to benefit the PwP.
Host: What is your web site?
Dr. Marco: we have a youtube channel, Antonio Costantini
Host: Patented therapy?
Dr. Marco: No, so patients can get relief.
Host: What else do you want to convey?
Dr. Marco: We have seen major regression of symptoms with our patients. Some earlier year patients, total regression. It is not our attempt to limit therapy, thus our free consultation.
We are open to collaboration with international research groups.
Host: This is clearly one of the top therapies that I have discovered over these past years.
Dr. Marco: Doc. C', 2010 one patient's chronic fatigue associated with his disease. Let's treat "your" symptoms as if it was beriberi. From that group of diseases we moved to others where results were more startling.
Host: Congratulates Doc. Costantini. Thank you Docs.
Comment that you can take short breaks from thiamine is interesting. Suggests that the effect is durabĺe but not permanent. That does not fit with Dr C's hypothesis of thiamine deficiency being resolved. How short is short?
Roy, I respectfully beg to differ on the permitted length of breaks. I have repeatedly seen Dr. Costantini say that the benefits from HDT will remain for up to about 3 months, after which the patient will relapse to where they were before starting the Thiamin. The 1-week breaks you are mentioning correspond to the "washout periods" when one is shifting between different doses of Thiamin.
Wriga, No contradiction! Dr. Çostantini never said that the thiamin would "cure" his hypothesized metabolic malfunction in cellular absorption or processing of thiamin. His idea is that the mega dose of thiamin will diffuse into the cell DESPITE the broken cellular machinery only while these large doses are being taken. We can think of the thiamin-deficient neuron of the patient as a city surrounded by a high seawall to keep the water (thiamin) out during normal weather conditions. But if the seawall is attacked by an unusually high ocean surge during a hurricane (megadose), the water (thiamin) can overcome the seawall and flood the city (neuron).
This is Dr. Marco Colangeli. Thank you very much for your excellent summary. Possibly something might have slipped through the cracks or been lost in translation/requiring further clarifications, but most things are accurate and I hope patients will find this summary useful.
If you or anyone on this page has further questions/would want clarifications on this subject please go ahead and contact us through this forum or directly through Dr. Costantini's email address which is:
carapetata@libero.it
I invite you all to see the articles we published on PD and many more health conditions (the long list you referred to above) which we have all had startling results with the use of high-dose thiamine and our protocol of therapy.
I am in the process of contacting you on behalf of my husband who is early stage PD! He hasn't started any conventional meds yet per his neurologist's suggestion. Would he (husband) still be required to start levodopa?
Hi can u pls tell me how you worked out which brand of mucus you take and what dosage. My husband has just started on madopar and I think it would be better to use mucuna. Are you in sinemet too? Thanks
Why Dr Costantini opted for a low bioavailability form of thiamine such as the water soluble thiamine hcl instead of the highly bioavailable Sulbutiamine, a lipophilic compound that crosses the blood-brain barrier more readily than thiamine hcl and increases the levels of thiamine and thiamine phosphate esters in the brain.
Subultiamine may act on lower dosages of 400-800mg/daily to treat certain PD symptoms and other disorders. A study with placebo group patents.google.com/patent/U... produced the following results.
"In Parkinson's patients, treated with sulbutiamine, an improvement in the cognitive, executive and mnesic functions was observed, with diminution of the sensation of fatigue."
If thiamine is to be successful and widely accepted for the treatment of PD it should be administer in a more bioavailable form such as in a liposomal carrier or a lipophilic form such as Sulbutiamine or Allithiamine or in another form developed for such purpose.
If I have to use it for life, as a patient I prefer a water soluble formula that moves away from the body with urine, Nobody knows with certainty how it works it can be useful in other ways too.
This is definitely an interesting point. You must know however that the forms of thiamine we used to date are the easiest to find in Italy and the most affordable to our patients. That being said, part of the reason why Dr Costantini and I strongly advocate for the need to partner with a large research institute/foundation is in fact to test our protocol under every aspect, and see how it can be improved in a number of ways if possible, including a module on the enhanced bioavailability of different forms of thiamine and the observation of their results on patients. There may be other aspects that could be further researched to enhance the therapy and we are looking for support from the rest of the (to date very skeptical) scientific community to make this happen.
Thank you for your prompt reply. Your work on Thiamine and the effort and time you put to improve the patients' lives is really impressive. Even if the scientific community fails to approve your treatment approach, the word of mouth won't. Maybe if you keep trying to communicate with MJ Fox foundation and other institutions someone eventually will listen. There are also institutions and multiple programs within the European Union that can offer funding for innovation and research. Also, Servier Laboratories in France hold studies and research on a thiamine derivative, you may try to contact them as well. After all, you hold powerful studies to prove your point. Regarding the availability of Thiamine, it may sound odd, but in Europe I can only find thiamine HCl as a supplement of no more than 100mg. Could you recommend any specific brand of Thiamine which can easily obtain in Europe?
Thanks to Hiawatha1 for sharing the Radio show. And special thanks to Dr Costantini and his research team for providing the treatment and making PD sufferers feel better.
2,500 thiamine patients, wow!
Art
All of the studies that Dr. Costantini has done including links to those studies can be found in the following post:
I was taking 2g/day starting March 24 with a small pause of few days and I had very good results after a week; more brain and physical energy and some tremor reduction. I had an episode with folic acid which gave me high palpitations so I stopped thiamine for few days and resumed gradually back to 2g/day. During last two days accidentally I missed the afternoon 1g dose and I noticed a big reduction in tremor so I will stay like this for a while. I'm not sure if the thiamine reduction is the culprit .
I skipped a day a week ago and also experienced tremor reduction that’s lasted. Until then my 8 week Thiamine intake had not reduced my tremor but had positively relieved motor issues.
I should add that my tremor has always been intermittent at a 4-5 with ten being the worst and one the best. It is now a 1-2 and holding.
He reconfirms that most patients already have enough thiamine in testing them, but they still improve symptoms when adding his high dose thiamine protocol.
Art
If you continue listening beyond Dr. Costantini to that same station, they start a discussion on PEMF which several here have found benefit with......thank you for that also Hiawatha!
I do not understand your question. You responded to my statement that was right above your post which was a brief mention about a discussion about PEMF therapy, but your question sounds like you are referring to the usage of thiamine? If that is correct that you are referring to thiamine usage by your husband, you also state that he has been taking it "on and off" with no apparent improvement. Thiamine is a life long daily commitment not something you can take "on and off".It needs to be taken twice a day, everyday, in order to achieve any benefit. From what I have read about thiamine some people have seen benefit in less than a week while others have required a month or more to see benefit and there appears to be some individuals who have not seen any benefit or benefit was not noted until they stopped taking thiamine and their old symptoms returned, making the benefit apparent. This is why Dr. Costantini requires that you make the two videos before starting his protocol.
Part of the problem appears to be that many people have decided to treat themselves with thiamine without contacting Dr. Costantini and getting his input. This means that you may not be taking the optimal dose to achieve maximum benefit and you don't know when a dose adjustment is needed. If you contact Dr. Costantini, he is going to want to know the following information as a basis to determine your initial dose of thiamine:
1. A complete list of "ALL" symptoms
2. Medical records
3. A complete list of all supplements and medications along with dosing schedule.
4. A diagnosis date or estimation of when you think you were diagnosed.
5. A short video (20 ~ 30 seconds) of you talking.
6. A short video of you getting up from a seated position to a standing position and then walking from that standing position (20 ~ 30 seconds)
7. Height, weight and age.
Having this information ready will be useful in your communication with Dr. Costantini and will also let him know that you are serious about considering his treatment as opposed to just being a lookie lou. Just because he is willing to talk to people who contact him does not mean he has time to waste.
Once on his protocol, he will want updates on how your husband is reacting to the thiamine dose he starts you with and once he has that feedback, he will adjust your thiamine dose as he deems necessary in order to get maximum improvement and he may also adjust your regular meds. He may also add other supplements such as certain types of magnesium or other B vitamins if he feels they will help. Without his input, you are essentially guesing at the dose and what to do if you think you are not getting the expected results.
If I completely misunderstood what you are asking, let me know and I can try again.
Okay, now I get it! I was just pointing out that there was that PEMF discussion after Dr. Costantini's if anyone was interested, but I have no experience myself with PEMF.
I think there are at least two people here using PEMF with noteworthy improvements and these would be the ones who can answer your PEMF questions!
One of them is Kewlfox and the other one is Dap1948. Here are links to their experience with PEMF:
My husband has been using PEMF for less than a month but not consistently and haven't noticed any tremor improvement. Of course, his RH tremor is intermittent so can't tell if PEMF is helping any. Maybe after a couple of months, who knows.
I have started a war with PD and I will win! I am very determined, and I wish my husband had the same fighting spirit and determination.
I understand your frustration! From the little I have read about PEMF, it sounds like it takes almost three weeks of regular use to achieve noticeable benefit. Hopefully your husband will stick with it long enough to find out one way or another!
I hope the thiamine is beneficial for your husband once he starts! It sounds like if PEMF works as advertised, it could be very useful in conjunction with the thiamine!
Art
It sounds like he is going to continue responding to email inquiries for as long as they are able, but it definitely sounds like they are close to being inundated with all of the emails! I'm sure that this radio broadcast is going to add significantly to that email load!
Dr.Costantini said textually that will answer all the people. The dr. Costantini is incredible.
I note that his last thought is always to reassure the PwPs and insists in Italian language with the translator that he says this reassurance as a conclusion (last 2 minutes).
Special thank to Dr. Antonio Costantini and Dr. Marco Colangeli.
My name is Marco Colangeli, I am Dr. Costantini's research assistant, co-author, and when needed, also translator. Thank you very much for listening to this show, it was a remarkable opportunity to share the findings of our research with more patients.
From our point of view there are a few aspects that should be highlighted and possibly further mainstreamed:
1) It is important from our point of view that also your own practitioners and MD are involved with this novel therapy. Therefore we do call upon your contribution to this research by informing your Doctors about this therapy and the beneficial effects you are experiencing. We have experienced an unspeakable amount of skepticism and lack of trust towards this simple yet incredibly effective therapy. If on the one hand we can see why this may happen, on the other hand we do consider that regardless the personal skepticism or any less-than-professional form of competition among doctors, it is fundamental for the well-being of the patients that your doctors are asked to contribute actively. This is particularly relevant in light of the fact that we have limited time and resources to follow a continuously increasing number of patients worldwide.
2) It is paramount that out clinical findings are taken to the next level by partnering with research institutes and pharmaceutical companies to fully understand and fully exploit the potential of this therapy. Our resources are too limited (since 2011 we have worked on this 100% without any form of external funding sometimes even purchasing from third parties the thiamine to provide our patients with) and we cannot mainstream the results of this research alone. The exact mechanisms of action of Thiamine on PD patients (as well as on a number of other conditions we have studied and documented at case-study level) must be researched and fully comprehended. Moreover, in the context of a proper double blind label type of research, this therapy can be A) improved even further and B) recognized by the scientific community. The most direct consequence of this is that millions of patients worldwide will experience the same if not better results that those who have tried the therapy because already in direct contact with us have.
I would like to thank you on behalf of this community members who have tried the Thiamine’s protocol successfully and their quality of life improved significantly. Many thanks to your team who have been working tirelessly to make this world a better place to live.
We fully understand your resources limitations and greatly appreciate it.
I very much appreciate if you please let us know about your new researches and results on the field of Parkinson’s Disease by posting in this forum.
Thank you, dear Dr. Marco Colangeli and Dr. Antonio Costantini! I’m deeply moved by your kindness and generosity extended to myself and many others from this community who have sought your knowledge and guidance. You have shown the medical profession a kind of humanitarian caring that is so rare and so desperately needed in today’s world.
A special thanks from Italian patients to Dr. Marco Colangeli and Dr. Antonio Costantini for the wonderful generosity they have in helping everyone, especially for the wonderful results that have given me and others an almost normal life.
First and foremost, thank you both and the rest of your associates for all that you are doing to help others!
I have emailed Dr. Costantini before (2016 ~ 2018) on behalf of three of my friends who are living with PD. I sent your study information with them to their respective doctors as suggested by Dr. Costantini. All three of their doctors refused to even look at your case reports! Their doctors would not consider supervising my three friends if they decided to go ahead with your protocol. Their doctors were very dismissive of the whole idea of thiamine as a treatment for PD. I'm not saying this is the case with all doctors, but I don't think these are isolated situations. Others on this forum can give an idea of how their doctors react to them using high dose thiamine???
In any case, despite your great success with high dose thiamine treatment, there appears to be significant resistance to your protocol in the medical community......at least where I live in California. This makes it difficult for patients who prefer that their doctor is completely involved in their treatment. Any suggestions on your parts on how patients can overcome this resistance from their doctors would be greatly appreciated!
I checked with my pharmacist if there are B1 injectables in my state. He said "Yes," but he needs a prescription from my Family Physician (FP). I will call my FP next week (long 4-day W/E ) and I will ask him if he will prescribe B1 injections. If not, I will purchase the capsules on line.
Interesting talk, I wonder if those of us that have some form of peripheral nerve disease, in my case small fiber are the ones most helped by this protocol.?
Since there is vastly more supporting reason to study thiamine then there was to study Nilotinib, I cannot understand why the Michael J Fox Foundation is spending millions on Nilotinib and are completely silent about thiamine - as though they're unaware of what's going on?? I've written them to ask why and will let you know if the answer.
Back in 2013, when we first published our research on PD with high-dose thiamine Dr. Costantini and I repeatedly emailed the MJ Foundation to inform them about our research and to ask support for a full on research that would have benefit millions of patients and made their Foundation probably the most successful of all.
No answer was ever given. Not even an automatically generated message. Five years have gone by, millions of patients are still unaware of this therapy and suffer and we have lost precious time that would have given us relevant answers (supported by the scientific community) on this therapy and its applications.
This has to be a grassroot movement evidently, therefore it is when PwP team up that our voice can be heard.
Hopefully MBAnderson, you will have better luck than us 5 years ago.
It's really disappointing. MJF rushed to spend millions based on informal description of 11 people. 11! If we looked around a little bit, we could find a doctor who would claim he cured 11 people of cancer with a McDonald's double cheeseburger. Phooey on you MJF.
In the radio broadcast to those who understand Italian will not have lost fantastic Dr. Costantini who insists to say the last word and his thoughts go to reassure the patients of PD (last 2 minutes):
Costantini: "Hi Robert, can I tell you the last words?
Colangeli: "Yes, but we must say goodbye ...
Costantini: "Parkinson's patients ... may already be from now ...
they may already from now be healthy carriers of the disease. "
Wonderful Dr. Antonio Costantini and Dr.Marco Colangeli
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Contacting Dr. Costantini?
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