Seeking Advice for Extreme Anxiety from Parkinson's Disease

This is just a guess from what I have experienced with nervousness and anxiety. I have to stay away from sources of MSG. It is difficult to stay away from hidden sources of MSG which are nerve stimulants and likely contributing to his symptoms but you could try a balanced formula of B-Complex (100 mg.) twice a day and take magnesium (250 mg.) four times a day, (15 min. before meals and before bedtime). You may want to start out with 500 mg. of magnesium just before meals until you see some improvement. KT

If he is taking a dopamine agonist like Mirapex, Requip or other similar meds, they are stimulants with unpleasant side effects. A close relative of mine who suffers from PD takes prescribed meds to calm anxiety. She stopped taking Mirapex due to terrible side effects. Initially used Xanax for anxiety. This worked for many years, but Dr now prescribed Klonopin for anxiety attacks. Glutathione (by IV drip) is great to alleviate symptoms of PD, but too hard to find & too expensive for most who suffer from this disease. There are a few promising treatments for PD in clinical trials. Nilotinib, currently FDA approved for blood cancer, leads the list. If not a cure, hope to see an effective treatment soon. Best to your brother & all who battle PD

I found that magnesium powder will dissolve better in orange juice.

Art, that was quite interesting, is there any way for you to share what vitamin it is that you were speaking of?

Thank you

Dear Art,

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

Hi Mary,

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

I find your site very informative. I have an elderly parent that was diagnosed with Parkinson's five years back and things are getting very difficult for her. If you could please share any information you have from the doctor in Italy and also what supplement powder we should buy to help slow down the progression of the disease we would greatly appreciate it. Thank you so much.

Mari

In reply to Mary Martinez (Arcadia, Ca)

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

Dear Art,

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~

Hello M to M,

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

Hi Mary,

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

Dear Art,

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~

Thank you so much for your info Art. The only thing my brother did was take Glutathione injections including vit B injections as well. Bless you and thank you again,

Peace,

Mary

Hello to all who are interested in Dr. Costantini's vitamin add on protocol for people with Parkinson's Disease. In a recent email from him, he sent me the following link which has almost all of the information that he shares with his patients including studies (3), thiamine dosing, videos of patients before and after treatment as well as time line results and most of it is available in Italian and some of it is also available in English.

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

Dear Art. I was wondering if you could tell me what dose of vitamin B1 did your friend take daily. Thank you for everything.

Hi Paula,

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

Dear Art, thank you for the information and your time. I am trying to help a neighbor of mine.

Thanks again, Paula