Replied by Art (California ) on 07/24/2017

Hi Mary,

I see you are writing about your brother again. It is good that he has an advocate looking out for his better interest. I have several friends with PD and I have done a lot of reading on their behalf looking for alternatives, since the standard treatment by our medical community does absolutely zero to halt or even slow disease progression. The currently available PD prescriptions only treat symptoms and can not alter disease progression, but some of those prescriptions can actually add to PD symptoms.

In researching for my friends with PD, I generated a list of over 75 supplements that have potential to be helpful for people with PD. Two of the main points that many studies high light is that excess inflammation and excess radicals, damage the human body and seem to feed the progression of PD so consequently many protocols for PD are aimed at reducing radicals of many types by taking some of the more potent free radical fighters such as alpha lipoic acid, n acetyl cysteine, melatonin, selenium and the like. For inflammation, the ability of these potent antioxidants to neutralize different types of radicals can lessen inflammation and then there are many antinflammatory herbs and supplements that can help to lower the overall inflammatory state associated with PD. Some of the better known ones are curcumin/meriva, boswellia serrata extract/5 Loxin/Akba/Apres Flex, pine bark extract, egcg/green tea, mangosteen, high grade fish oils, magnesium in many forms that are more bioavailable than magnesium oxide. Topically applied mag oil/ magnesium chloride is one good one because for some people when applied to the skin it is calming and tends to relax stressed muscles. Another form called magnesium l threonate is purported to effectively cross the blood brain barrier and is thought to be about the best for targeting the brain, which should be a good thing for PD patients. Many of these supplements may have synergy with one another and could potentially slow the disease progression which is good since the prescription meds can't. I think in a previous reply to you, I mentioned one study that suggested that vitamin D may have slowed or even halted disease progress for one year. That alone is worth making sure that your brothers vitamin d level is replete and closer to the top of the reference range than to the bottom. Reference range for 25 OH d level is 30 to 100 ng/ml. Most people are insufficient (blow 30 ng/ml) or deficient (below 20 ng/ml).

On a more important note, in all of the reading I have done regarding PD, I came across a few small studies by two different medical groups that utilized a common vitamin at very high dose that was administered by intramuscular injection. These two groups were in very different areas of the planet and were not associated in any way, but their clinical findings were very similar. One group was in California and the other was in Italy. Both groups came to the conclusion that their specific treatment, not only halted disease progression in PD patients, but actually reversed motor and non-motor symptoms! I know that is a heck of a claim for PD and so it made me want to contact either of these two groups to find out if they were accepting patients.

I tried to contact the California group first since that seemed to be a simple thing to do, but I was told that the neurologist who was the lead researcher for his group, had passed away and none of the other researchers from his group were continuing the research so it essentially died with him.

Failing that I decided I would try and contact the research group in Italy by email. To my surprise, the lead research neurologist contacted me and sent me three clinical research studies that he had done over the past 5 or 6 years. I told him about my friends with PD and he told me it would be ideal if they could come to Italy to his clinic, but he said that even if they couldn't come to his clinic, he could still try to treat them via email. He said he needed a copy of their medical records and a short video of them talking and a short video of them walking. He said the videos were not for him, but rather for the patient to watch every now and again so they could have a basis for comparison as time passed.

Only one of my friends decided to try this doctor's protocol, but the first problem he ran into was that none of his doctors were willing to give the twice weekly injections and he even checked in Mexico to see if he could get them done there, but he didn't have any luck there either. At that point, I wrote the doctor again and asked him if it would be possible to take the supplement by topically applying it to the skin with DMSO? He wrote back and said there was no need to go through the inconvenience of having to apply the supplement with DMSO, as my friend could just take a very high dose of the vitamin supplement on a daily basis and while he said it might not work as well as the injections, it would probably halt the disease progression and likely reverse some of the symptoms. He told me he had treated several of his PD patients who were opposed to twice weekly injections with this oral method and he said it worked very well for them.

Armed with all of this information, one of my friends decided he wanted to give it a try and so he first ordered the supplement in a pure bulk powder form with no additives. He started on the protocol that the doctor set out for him. He was a bit hit and miss at first, because he started to feel improvement in the first week and he started slacking off on his dosing which soon had him feeling bad again. I should mention here that the first symptom that improved for him was anxiety. He said this anxiety made him feel bad everday of his life and within two weeks of taking his supplement mixed in Gatorade, his anxiety level dropped way down to where he felt pretty comfortable again.

In any case, my friend started on this supplement last November and is still taking it because he simply says he feels better with it and without it he could tell that his PD was definitely progressing at a fairly quick pace whereas now he does not feel that his PD is progressing and some of his symptoms are better.......including the anxiety.

One of the reasons that I felt my friend would slack off on taking his supplement was because he has to mix the bulk powder in Gatorade and this is not always convenient, so I found some high dose capsules of this vitamin and he started taking those on a more regular basis than the powder, but recently he told me that he wasn't positive, but he feels like the bulk powder is more effective than the capsules and even though it is a little more trouble to take the bulk powder, he is going to go back to it when he runs out of the capsules. One possible reason that the powder may be working better for him is because it has no fillers of any type while the capsules are gelatin and then there are additives in the capsules for various reasons which may work against the active compound.

Mary, if you want to know more about this, I can find the links for the studies I have seen as well as a couple of YouTube videos that show some of this neurologist's patients before treatment and awhile after treatment. In corresponding with this doctor he told me he has treated over 100 PD cases with this protocol and only had one patient who could not tolerate it as she would throw up right after she got an injection.

Lastly and also of importance, this is not a cure and the patient still needs to take their regular meds. If you stop taking the vitamin, all symptoms return and the disease continues to progress again. Based on what my other friends with PD have told me, their doctors are not open to this whole idea and will definitely "not" do the injections for them. One of my friends took all of the studies I gave him so he could show them to his doctors to see if they would monitor him if he started taking the supplement and they flat out told him no and not only that, they wouldn't even look at the studies........they said they had no time to be reading worthless studies, but they are quite fine with prescribing drugs for him in which they know he will end up a drooling, shaking and demented mess!

Art

Replied by Mary (Arcadia, Ca) on 07/26/2017

Thank you so much for the time to write me and let me know what is happening. It's alright with me if you tell me the steps and what to use. I appreciate all the help I can get. Blessings to you,

Mary

Replied by Mary (Aracadia, Ca) on 07/27/2017

Blessings,

Mary

Replied by Kt (Usa) on 07/24/2017

Replied by Elaine (Valencia, Ca) on 07/25/2017

Replied by Kt (Usa) on 07/25/2017

Replied by I.m. Trying (Nm) on 07/25/2017

Thank you

Replied by Mary Martinez (Arcadia, Ca) on 07/25/2017

Thank you very much for all your information. I would love to have the email address of this doctor. My brother suffers so much and taking care of him is difficult. I would love to see him be comfortable again. He is such a wonderful person and needs so much help. Thank you for this wonderful post you sent me. May God always protect you and help you in every way you need. Peace, Mary

Replied by Art (California ) on 07/25/2017

I just sent an email off to the doctor to ask if it would be okay for me to give his email address to you. He usually get's back to me in a day or two. On the chance that he does not want to give his email address out at this time, I will gladly share with you everything he told me about his protocol and its effects on his PD patients. I was going to wait to hear back from the doctor before replying to your post, but I didn't want you to think that I was just blowing you off by not replying right away in case he doesn't get back to me right away.

Art

Replied by Mari (California) on 07/26/2017

Mari

Replied by Art (California ) on 07/26/2017

Hi Again Mary.

Good news, the doctor (Dr. Costantini) wrote back and said he would be fine with you sending him an email. I mentioned your name and feel free to mention my name when you write him so he will know you are the person that I mentioned to him.

Briefly, his protocol is an add on to standard PD meds. For others who are interested, the vitamin he uses is thiamine/thiamin. Thiamine is also known as vitamin B-1. He uses twice weekly intramuscular injections to obtain very good benefit, but he said that daily very high dose oral supplementation can be very useful also.

Many people believe that taking a high dose of any one of the B vitamins can put the other B vitamins out of balance, but Dr. Costantini said he has not had that problem with any of the patients he has put on his protocol. My friend that is using high dose thiamine said he feels the bulk powder seems slightly more effective than the high dose capsules, but clearly the capsules are more convenient so for him, he tends to use both, but his preference is for the pure bulk powder mixed in Gatorade. I tried both the powder and capsules just so I would know what it was like to take them in such a high dose. I had no problem with either one, but I do not have PD, so I can't personally speak about the effectiveness of the protocol. I would definitely put this vitamin at the top of my list of over 75 potential supplements for PD!

From what I have seen from my friend who has been on this protocol since last November, changes and benefits can come relatively quickly (less than two weeks) or they can take longer and be more gradual. No alcohol can be consumed while on this protocol because alcohol tends to interfere with thiamine and my friend told me that if he does drink alcohol, it will set him back for a few days before he starts feeling close to his normal.

Dr. Costantini, said that in his clinic he uses the injections for almost all of his PD patients. He said he has used the oral supplementing for his patients who do not do well with injections. From the tone of our conversations, it sounds like the injections are more effective than the oral supplement because he tells me that his patients who get the injections stop their diease progression and reverse their motor and non-motor symptoms. I seen videos of some of his PD patients and the apparent results are quite impressive.

I realize that many people will read this and say, "too good to be true" and usually when things sound too good to be true........they are. In this case, I would say, what are you risking if you go ahead and take the oral supplement at the dosages he suggests. I am not going to answer that question for anyone who is interested, but I will say to do your research and specifically look for "the toxicity of vitamin B1/thiamin/thiamine. I did and was quite surprised to find out you will be hard pressed to find toxicity reports for B-1. The dose is based on your weight and clinical condition which Dr. Costantini will determine after reviewing your medical records. Based on his clinical research, the doses he recommends have not caused negative side effects in his patients with the exception of his patient who would throw up after getting her injection.

Mary, if you wouldn't mind and it is okay with your brother, could you tell me a little about him such as weight, height, age and length of disease or elapsed time since diagnosis and main symptoms other than anxiety which is fairly common in PD patients. If it is too personal and you or your brother wouldn't be comfortable doing so, I understand and it is not a problem. Please keep us posted, Mary!

Here is a copy of Dr. Costantini's reply to my email:

Dear Art, Hope this email finds you well. I agree with the publication of the protocol on the forum you mentioned, we will be glad to answer all the questions the patients will ask us by email. You can suggest to the member of the forum to visit the website "Ultimaedizione.eu", where they could also find the English version of all our work and the interviews of the patients subtitled in English. It's extremely important for us that this treatment is known all over the world, we already have a lot of foreign patients: this way there will be no more people suffering from PD symptoms, with the stop of the disease progression.Thank you for what you're doing and don't hesitate to write if you need help or information.Best regards, Antonio Costantini

Here is Dr. Costantini's email address: [email protected]

Best of improved health to your brother!

Art

Replied by Mama To Many (Tn) on 07/27/2017

Thank you for taking the time to share this information on treating PD. How wonderful!

I too can be skeptical that something as simple as a vitamin could bring "too good to be true" results, but having seen dramatic results with Thiamin with a sheep, I will share it to encourage.

A few years ago we had a newborn lamb that was very sick. My son brought him in from the field because he was behaving in a very disturbing way. He was arching his back and writhing, perhaps he was having seizures. His spine seemed to be moving in a way that you would not expect to see an animal's spine move. It appeared to be something neurological. We quickly began researching and found that a thiamine deficiency in newborn lambs could could a neurological disorder - polioehcephomalacia that would have these sorts of symptoms.

I actually had some thiamine tablets on hand so we crushed them and added them to water and gave it to him orally with a syringe. His symptoms stopped in less than 30 minutes. It was astonishing.

~Mama to Many~

Replied by Art (California ) on 07/27/2017

That is very interesting about the lamb........what type of dose did you use for the lamb and for how long?

Yes, thiamine is a fairly impressive vitamin and Dr. Costantini has used his protocol to treat other diseases with it. He has many published studies on PubMed where he used thiamine to very good effect, but he told me that it is most potent for patients with Parkinson's Disease. He also said that it is generally helpful for diseases that have "severe fatigue" as a major symptom of the disease and helps to ameliorate the fatigue.

Dr. Costantini has also affiliated himself with another research clinic in Italy where a neurologist there is implementing Dr. Costantini's protocol to treat his patients with PD and is enjoying similar results. They are corroborating on patients' results to try and fine tune his protocol and reach more patients with PD.

The research group in California that I mentioned previously was using even higher intramuscular doses in combination with more frequent administration and according to their study that I read, patients were getting similar results to the Italian group, but the results were coming even faster at the higher dose, but I suspect that side effects may have been a limiting factor at the even higher dosing they were using. Dr. Costantini has been using this protocol for quite a few years now as his first PD study is dated August 2013 and I'm sure he was already utilizing his protocol well before that study was ever posted.

Art

Replied by Art (California ) on 07/28/2017

Since your brother does not want to do prescription meds, but is fine with vitamins and supplements, please look into Mucuna Pruriens (MP) for him. Here is a recent study that suggests low dose MP may be as good or better than prescription levadopa/benserazide which is typically prescribed for people with PD, but MP does not have the dyskinesia side effects that prescription levadopa/benserazide can have in some patients. These side effects can be as bad or worse than PD symptoms.

High dose MP had similar effects as levadopa and was similarly effective with a better safety profile.

http://www.neurology.org/content/early/2017/07/05/WNL.0000000000004175.long

There are other studies relating to MP and PD that you can search for.

One point that Dr. Costantini made to me is that if a person let's the disease advance too far before attempting to do something about it, there may be a point where a full recovery may not be obtainable. This is not to say that you can't improve your symptoms if there are too many, just that your chances for best improvement are correlated to earlier treatment. Every patient he treated definitely showed improvement in symptoms, but people he treated early on in the disease process seemed to have a better chance at the best recovery.

As I mentioned, there are many supplements and vitamins that are likely to be useful for people with PD if they are willing to make the effort, but many people only want an easy way and sometimes it takes significant effort on the patients part if they want to try the natural route.

Art

Replied by Mama To Many (Tn) on 07/29/2017

Unfortunately, I do not recall how much thiamin I used for the lamb...how often, just the stunning results.

Thanks for all the thiamin information. It is fascinating and encouraging, too.

~Mama to Many~

Replied by Mary Martinez (Arcadia, Ca) on 07/31/2017

Peace,

Mary

Replied by Art (California ) on 08/03/2017

You may have to search through the link in order to find all of the information, but it is worth the effort! Here is the link:

http://www.ultimaedizione.eu/parkinson-eng/

In the videos, you can see that his patients are at varying degrees of disease progression and some are in the "severe range" and still show dramatic improvement by just adding thiamine/thiamin/vitamin B-1 to their standard PD prescriptions meds.

In any case it is worth reviewing and or sharing in case you happen to have a loved one or friend with PD who might benefit from adding Dr. Costantini's protocol. It is easy to obtain, relatively inexpensive, apparently quite effective for many people with PD and all with a very impressive safety profile! Pretty hard to beat that!

Art

Replied by Paula (Richmond Hill, Canada) on 08/10/2017

Replied by Art (California ) on 08/10/2017

The dose my friend used was determined by Dr. Costantini, once he reviewed my friend's medical history. He started him at 4 grams total per day. He started at 2 grams at breakfast and 2 grams at lunch everyday and then Dr. Costantini adjusted his dose after two or three weeks and some feedback from my friend.

Initially he used pure powder form mixed in Gatorade to try and lessen the bitterness. I tried it for awhile myself just to see what it was like to take it. It is bitter, but for me it was easilly tolerable. After sometime, I found 500mg capsules and my friend switched to those to make it easier to take when he was away from home, but even at that dose, it required 8 capsules a day total. More recently my friend told me that he felt the pure powder might be slightly more effective than the capsules, so I asked Dr. Costantini about that and he told me it should be the same whether capsules or pure powder. In any case, my friend said he prefers the pure powder because he feels it is slightly better than the capsules, but he is currently taking both. I imagine one reason the pure powder might be slightly better is since it has no additives or fillers of any type and also your body doesn't have to deal with all of those gelatin capsules.

I hope that Mary from Arcadia California keeps us updated on her brother if he starts. I'm not sure how it will work for him because he doesn't take any Parkinson's medications and according to Dr. Costantini, it is required for the patient to continue to take the Parkinson's prescriptions meds along with the thiamine in order to get the best results, so it will be interesting to see how her brother does.

Art

Replied by Paula (Richmond Hill, Canada) on 08/12/2017

Thanks again, Paula