Art, thank you these wonderful posts on Parkinsons! Very encouraging for sure! I am a 71 year old female with signs of PD but no diagnosis. I am very interested in the protocol from Italy. If you could forward that I would be very grateful. Art, have any of your friends incorporated the Hydrogen Peroxide or Blue Methylene into their tx with any success? Also, was the one pill you mentioned in the post on probiotics actually just that? Do you recommend prebiotcs in conjunction with probiotics? Sincerely, Karen
B1 - Thiamine
I was diagnosed with PD in 2010 at age 50. I managed to continue work for six years but struggled to do my job in that 6th year which was extremely stressful. Trying to hide my diagnosis was additional stress. Having to stop working only increased my depression and anxiety. I am single and live alone and was struggling with day to day activities. I envisioned my future as residing in a nursing home. I found little relief from PD medications and only experienced new problems from their side effects. I was given more medications to treat the side effects.
I feel like a different person now. Still far from who I was before PD but now I can do my daily activities slowly and no longer suffer anxiety, off the Xanax I took for 3 1/2 years, and minimal depression. I get the blues on occasion. I only take Selegiline 5mg twice a day as a prescribed medication. I was prescribed 7 medications previously.
I started high dose B1, Thiamine, June 2018, taking 1/4 teaspoon in water, twice a day. I did not notice any change in my symptoms. I increased it to 1/2 teaspoon in water, twice a day, still no change. I continued taking it anyway. I then purchased capsules, 500mg. I take two, twice a day. I started noticing that I was using my right hand for things I could not do before. The changes have been subtle but to me significant, giving me hope. I have more energy and feel more alive. My movements are more fluid.
I must add that I also changed my diet. I have been vegetarian since I was 16 but now I am, or try to be, gluten free, dairy free, plant based diet. I suffer chronic pain and wanting to decrease inflammation. I also added the use of low level red light therapy. Not sure what is working but I feel I have turned a corner and instead of declining I feel I'm improving, very slowly.
B1 - Thiamine
In reply to Mary M. (Arcadia, Ca),
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!
B1 - Thiamine
Previously I discussed an Italian neurologist that has made a rather remarkable discovery about using a vitamin to very good effect in treating Parkinson's Disease patients. With the passage of time it is becoming very clear that the treatment is very helpful for alleviating many PD symptoms beyond what the meds alone can do.
The vitamin is vitamin B-1 or thiamine and he uses it at high dose as intramuscular injections in his office in Italy. Unfortunately, these I.M. injections are somewhat difficult to get here in the states and even harder to get your doctor to prescribe them and monitor you. The medical community here in the states is resistant to the whole idea.
The neurologist in Italy is Dr. Costantini and he has been using this protocol on his patients for 5 years+ and the results are fairly remarkable. In patients who have been on the protocol for 5 years, in addition to the symptom improvements, he has seen no progression of the disease during these past 5 years and one of his patients who had a datscan done showed no apparent progression on a recent datscan!
You are probably thinking, well, he's probably only treated a few patients with this protocol, but he has actually treated over 2,500 patients with thiamine im injections and the results have been very good as well as quite durable over time! He also has another group of over 200 patients from around the world that he treats remotely via email. I've been in contact with Dr. Costantini for about three years now after reading some of his studies on PubMed while researching for three of my friends who have PD as well as two acquaintances with PD.
I've read quite a bit on the subject and Dr. Costantini has been very helpful in keeping me up to date on how his research is going and he found that oral thiamine can be used effectively also! This makes his protocol very useful to many more PWPs around the world because of its easy availability at relatively low cost. Thiamine has many health benefits that are rarely mentioned and is also effective for a few other neurolgical conditions as well as MS! It does require a very high oral dose each day and is compatible with most PD meds adding to its versatility for PWPs!
What I have found from approximately 45 people who are taking his protocol that I am following is that one of the hardest parts to this protocol is finding the correct dose for each individual patient which has taken up to 6 months and varies significantly from patient to patient. In these 45 patients, the ones who have gotten the best results are those who have worked with Dr. Costantini continuously through this initial period while trying to find the correct dose. Once the correct dose is found, then it is just a matter of taking it everyday along side your regular PD meds. The results that these 45 people have gotten are impressive! Everyone is different so results can vary from patient to patient. Out of these 45 patients all say they will continue to take the vitamin for the rest of their life!
PD is simply a horrible disease and the current meds only address symptoms while doing nothing to slow disease progression, while thiamine in Dr. Costantini experience with over 2,700 patients shows the potential to affect disease progression positively as patients who have been on it for over five years and then stop taking it only show symptoms similar to or better than when they started!
If anyone is interested in this protocol or has questions, I will post more about it as well as how to Contact the doctor.
(Iron Station, NC)