6 User Reviews
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
Go look up Kombucha mushroom, which isn't a mushroom (more akin to the mother in apple cider vinegar). Dr. Josn Axe (chiropracter) has a good article on his site. First heard of this one as a tea to take for cancer - actually you are fermenting your regular tea, which produces the probiotics (good guys in your gut). If you can't find someone locally with mushrooms to give away, you can go on line and order one. Another article you might want to read is an article on Dr. Bradstreet, Dr. Ncholas Gonzales & another whose name I do not remember. These 3 doctors are no longer with us as all 3 were collaborating on a study. Finding that their autistic and their cancer patients all had a foreign substance in their blood called nagalase. First heard of nagalase in Ty Bollinger's Quest for Cures for cancer,. A female doctor in another country was telling Ty they had found all their cancer patients had nagalase in their blood and they were treating them with probiotics called Bravo and it was working and they knew it was because the nagalase level was dropping. Apparently they found how the nagalase disabled the immune system before these 3 doctors started their research because they were treating their autism & cancer patients with GcMaf, a messenger that one part of our immune systems transmits to another area of the immunne system to trigber the production of macrophages or large white blood cells that are also called the pac men of our immune system because they gobble up the invading pathogens which make us sick. Not sure what the G is for but suspect it is Globulin & and c denoted the type of globulin, The Maf is macrophage activating factor. There was one one lab on our planet testing for nagalase and only one source of GcMaf which were both located close together, but not in the USA or South America. These 3 doctors were seeing 100% cures of various kinds of cancer and 85% cure with improvement in the other 15% of their autistic patients, before they got raided by the FDA, who confiscated all their information, their data on their research & all their charts. Dr. Bradstreet suddenly disappeared the day his clinic was raided. His body was found floating in a river 3 days later with a bullet wound to the chest & declared a suicide with no investigation whatever. His family, friends & peers said no way did he commit suicide & IMO no way did this man who had become outspoken against vaccines when his own 4 year old son developed autism. No way would this man have killed himself when he knew something was helping his son and there was any chance of getting more of it. No way could he have known that their equivalent of our FDA had raided the only lab testing for nagalase and the only source of GcMaf had also been raided and destroyed about the same time these 3 doctors' clinics were raided & destroyed,
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.
I am very excited for you about your results using vitamin B-1! Congratulations! Your willingness to consider something other than the standard meds is going to pay dividends for you through the years! Standard PD meds can not currently slow disease progression at all, only suppress symptoms, but what you are doing is very proactive and will be able to do something important that the meds can't! With standard meds you just watch your symptoms worsen and neurologists will do their best to adjust your meds, add meds and give other meds to help try and offset the side effects from the meds they give you, but all the while the disease continues to progress and your symptoms will increase and worsen, but you have stepped out in front of this horrible disease and are changing that course for the better!!!
I was wondering what result you are getting with the "push test" compared to your push test pre-B-1? Also I am curious as to your improvement on your UPDRS test since adding thiamine? Are you at least at a 50% improvement on your UPDRS test?
These are two tools that can help confirm whether your B-1 dose is optimized or not. You can achieve symptom improvement with a dose that is too low, but you can achieve maximum improvement at the optimal dose which can likely be found by continued testing on your part. I can tell you more about that if you are interested.
You are already past the "honeymoon period" at 8 years since diagnosis, so your symptoms were more likely to decline at this point, but B-1 is showing the potential to very significantly slow or halt disease progression at the correct dose in well over 3,000 patients now. There is currently only one patient with a 5 year old DatScan and a recent DatScan. That recent DatScan shows no disease progression in the 5 years! This is very exciting news, but there are many patients who have been on B-1 for over 5 1/2 years who have taken a B-1 holiday until their symptoms returned, but in no case have the symptoms been worse than when they started B-1! Once the symptoms had fully returned, they started back on the same dose they had been taking and once again the symptoms diminished or were fully suppressed! These B-1 holidays can be taken on a regular basis with no ill effects. Usually in the range of one month to three months.
Another major advantage to B-1 is that once you have fully optimized your dose, perform a good "push test" and are stable, you should not have to increase your Sinemet or other Levodopa / Carbidopa dose and may actually be able to reduce it a bit. This is the exact opposite of what normally happens on these meds which usually need to be increased as the disease progresses until they are finally no longer effective!
Another point I would like to make is that it is possible to not only optimize your thiamine dose, but you can also optimize the dose of your C/L med to the B-1 dose to achieve maximum improvement, especially in terms of motor symptoms, but the B-1 at the proper dose is also very effective against non-motor symptoms!
Karen, please keep us posted on how you are doing and if you have any questions, let me know.
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.
I am not sure if I read about Vitamin B1 here on Earth Clinic or on Dr. Mercola's site. I know it was just a casual mention. Either way, about 18 months ago I told my husband (qualified in brain science) about its potential usefulness for my mother-in-law who has Parkinsons. He researched Dr. Constantini (using Google translate) and with my mother-in-law's specialist's OK put her on 200 mg orally at 8 am and another of the same dose at midday - every day. The specialist now says my mother-in-law is the best improved of all of his patients after treating her for at least a decade. She is on a walker, lives alone, still cooks, cannot bend over so has council cleaners and family to shop. From being depressed at the age of 88, she is now alert and sociable. She is clearly less affected by the disease and less focussed on restlessly awaiting the next timed dose of the standard Parkinson's treatment (which she still takes). My husband says her specialist has noted a reduction in tremor and other symptoms(previously debilitating).
The vitamin comes in 100 mg tablets from a common supplier (so 2 at a time) and is available from any chemist here. No 'special' brands appear to be necessary. My husband worked out the dose from looking at the research and did not consider her status - he just reviewed the trials. It was understood at the time that the dose could be variable so we may have just been lucky to gain improvement at the first attempt. It was clear after a few weeks that she was brighter and happier. We have suggested to the partners of friends similarly affected that it might be worth a try even sending copies of the research. While the specialist we deal with is open to science, it seems some are not. In our case, I think my husband's grasp of the jargon and brain research helped. He attends every appointment with his mother so there was also a shared endeavour in looking for ways to improve. We had previously found that if she painted, the repetitive movement cancelled out the tremor for a while so there was already credibility and trust with the specialist. Keeping written diaries of symptoms also assists.
I sincerely hope that others reading this will investigate this information themselves and take action with medical help.
I have watched members of my family die and suffer from de-generative brain diseases. There is more information available now and we and our doctors should all take note.
Thank you to Earth Clinic for providing this invaluable resource.
EC: Thank you for the wonderful feedback, Hashiaussie!
Art Solbrig was the first to mention B1 and Dr. Constantin's research on Parkinsons and wrote extensively about it for Earth Clinic readers. Here are his posts from last summer on the subject. https://www.earthclinic.com/mobile/answers/cures/parkinsons-disease-extreme-anxiety.html
I'm glad to hear that your mother-in-law is doing well on thiamine! One question, is your mother in law a fairly small person? The reason I ask is because the dose she is taking is nowhere near the doses that the 45 patients in my previous post are taking and Dr. C has told me that he gives up to 6 grams per day in some PWPs and even higher in other diseases that he treats with thiamine. He also told me that he has found that some non Italian people require less thiamine than most of his Italian patients.
In any case, it seems that the hard part is for some PWPs to find that correct dose and it has taken up to 6 months in some cases. Basically trial and error and working directly with Dr. Costantini via email has proven to be the most efficient way to find the most optimal dose in the shortest time possible and I feel it is his experience with over 2,500 patients that makes it easier for him to determine that dose. Definitely, one dose does not fit all!!!
If the dose is too high, a worsening of symptoms can be seen. If the dose is too low, no benefit can be seen. In the 45 I am following, the average daily dose appears to be around 3 grams total per day, half at breakfast and half at lunch. Most of the 45 are using 500 mg capsules to achieve these doses. The capsules are easier to swallow than the 500 mg tablets. Thiamine can also be purchased in pure bulk powder which has no fillers, but it is bitter and will have to be mixed in something sweet like a sports drink. Avoid using any citrus type juices to drink your thiamine down with as they can alter the availability of the thiamine.
From what I have seen from the 45, benefits can range from relief of anxiety, depression, constipation, bradykinesia, stiffness, dizziness, dystonia, muscle cramps and when used in conjunction with the correct dose of Levodopa, tremors to name just some common ones from a fairly extensive list of potential symptom improvements. Add in the possibility of potentially stopping disease progression as long as you take it and I think most PWPs will see the value of this supplement!
Dr. Costantini advises not to take thiamine in the evening as this can cause sleep issues in some people, but his daytime dosing has improved sleep in others.
Some people prefer the IM injections, but these require a prescription and can be ordered online from a compounding pharmacy in Northern California.
He also uses the standard, "pull test" as one measure to help determine when the dose is optimal and balance is maximized. It is common for people to start seeing the benefit within the first two weeks, but it is also common to see a worsening of symptoms after three weeks or more and this indicates that the dose is now too high and needs to be adjusted downward. If no benefit is seen after three to four weeks of supplementing, the dose is likely too low and will need to be adjusted upward.
Once your dose is established some patients have been able to reduce some of their PD meds. Another good point to his protocol is that once you have established your correct dose, the effects can last for a while, so you don't have to panic if you miss a dose or two or three or four or five!
His longest patients on thiamine are currently at the 5 1/2 year mark with no signs of disease progression.
I consider this the number one supplement for PD followed by vitamin D and the proper types of magnesium!
Hi Art...My great thanks for the information on Thiamin for Parkinson's Disease problems. That was a fascinating read for sure.
As regards your PD patients, I thought it might be useful to add certain things that I've learnt through using the orthomolecular approach.
Dr. Joel Wallach, a well known natural healer, pathologist and veterinary doctor, has also found one of the main causes for congestive heart disease. In one of his online discussions, he told a story. He was asked for help by an Indian zoo authority who were looking after dolphins. They said that alot of their dolphins -- an unusual number -- were dying and they didn't know why. When Dr Wallach did his first post mortem on one of the dolphins and when he looked at the dolphins heart, he immediately knew why the dolphins were dying. These sick dolphins all had congestive heart disease. He said the dolphin's heart was massive - three times its normal size. He eventually chased this problem - caused by lack of thiamin in the dolphins diet - to the fact that the zoo authority was giving the wrong kind of fish feed to the dolphins. The regular fish feed had zero thiamin. So Dr Wallach advised them to feed the dolphins another kind of fish containing sufficient amounts of thiamin and no further unexplained dolphin deaths occurred.
My purpose in telling the above story is to suggest that thiamin would be useful at higher orthomolecular dosages for any problem involving inflammation and would particularly be useful for nerve pain and repair(and beneficial for the brain if there is any inflammation).
The second thing I would mention is that whenever I advise higher doses of any B vitamin like thiamin, B6 or niacin, I would always also advise that all the B vitamins be supplemented as well. The reason for this is that all the B vitamins seem to have a dependency or close relationship with each other and seem to work synergistically with each other for a better overall healing effect. So whenever I advise a higher dose of any particular B vitamin, I always advise additionally taking B50 complex or brewer's yeast as well.
The last thing I would mention would be to try and improve the transport and delivery of thiamin(or whatever vitamin/nutrient) to the inflammation site. After all, if your veins or arteries are blocked or restricted at the periphery for whatever reason, then few nutrients will be able to reach the problem site so little healing is likely to occur. This is particularly true at the periphery of the body -- when you are trying to deliver nutrients and reach problems occurring in the hands, feet and brain areas. What I usually always do is use niacin to both open up the capillaries and safely thin(or unclump) the blood to try and ensure that the delivery pathway is clear and free of constriction or obstruction in order to maximize delivery of the supplemented nutrients to the peripheral site. You could also use other nutrients like magnesium chloride, capsiacin or gotu kola for the same purpose if you prefer.
Thank you for all of the useful information you sent! I will pass it along to the "45" who I am sure will consider all of it. What I have found with them is that they are very proactive and as such are "very open" to out of the box thinking and alternatives. I think many people are not aware of the value of the B-Vitamins and I used to be one of those people, but we live and learn! I can say that I am definitely learning from them because they are very focused in finding better ways of treating this horrendous disease and following Dr. C's protocol is a perfect example of this as so many other PWPs aren't even interested, even though their conditions may be progressing at an alarming rate. I often wonder about why some people are so open to alternatives while others will only do exactly what their doctors tell them to. When it comes to PD, following just your doctor's advice means that you will definitely decline over time, while the 45 seem to improve over time! It is early days, but so far, Dr. C's protocol seems to be one of the best, if not these best alternative currently out there for PD!
Bill, it is good to see you posting here on EC again! I hope things are going well for you in the PI and thank you again for the information!
(Iron Station, NC)
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