There is enough space on a sheet of paper to summarise the revolution that is taking place in the world of Parkinson's, even if the information does not reach 99% of sufferers and their families. A revolution on paper, but not yet in real life.
What some brave and compassionate neurologists advise in books, articles and scientific studies in recent years. Some blogs and forums offer very valuable information about all this... In general, all treatments can be taken with your regular medication. It is up to your doctor to adapt everything to your specific case...
[ATTENTION: YOU SHOULD CONSULT EVERYTHING
WITH YOUR NEUROLOGIST AND YOUR PHARMACIST].
VITAMIN B1 (thiamine hydrochloride): About 4 grams per day on average, divided into two oral intakes, with similar efficacy to intramuscular, easier and safer (SMITHLINE 2012). Results of the Costantini 2013 neurological study: 31-77% motor and non-motor improvement (UPDRS scale). Or 100 mg intramuscularly, twice a week. (SMITHLINE 2012, LUONG AND NGUYEN 2013, COSTANTINI AND FANCELLU 2013, 2015).
VITAMIN B2 (riboflavin): 90 mg daily, divided into three doses (30-30-30). Despite some "flaws" in the study, motor improvements of 44-71% between 3 and 6 months. Three of the participants, 100 % improvement - Hoehn & Yahr scale - (COIMBRA 2003, MARASHLY 2017).
200 and 400 mg were used to treat migraines in children and adults with success and without adverse effects (SCHOENEN 1994, 1998, 1999).
VITAMIN D3 (cholecalciferol): 1200 IU daily for one year. Disease arrest, no worsening according to UPDRS scale (SUZUKI 2013).
Between 5000 and 10,000 IU daily, recommended or used in studies by these neurologists (PERLMUTTER 2013, COIMBRA "PROTOCOL", HILLER 2018, FULLARD AND FULDA 2020). During 30 minutes of sunbathing on the beach, the body synthesises approximately 10,000 IU (FULLARD 2020).
VITAMIN B12 (cobalamin): as with vitamin B1, high doses of 500-2000 mcg/day orally overcome the body's obstacles (including the lack of intrinsic factor in the stomach: ALBADAL 2005). B12 modulates the main "hereditary" Parkinson's gene, LRRK2 (SCHAFFNER 2019); inhibits alpha-synuclein (JIA 2019); slows Parkinson's progression, symptoms such as freezing, gait and postural instability are worse with lower B12 and non-motor, cognitive ones - especially depending on homocysteine level (CHRISTINE 2018); is related to symptom severity (MCCARTER 2019) as well as a lower risk of dementia (CHRISTINE 2018, MCCARTER 2020), etc.
Sources of information: neurologists, scientific studies (Costantini 2013, Coimbra 2003, Fullard and Fulda 2020, Christine 2020...). Pubmed (Medline), HealthUnlocked - Parkinsons Movement, Neurotalk Support Groups - Parkinsons, PIENO in Internet Archive, blog "Parkinson's here and now"...
Jesus Marquez Rivera (Parkinsons here and now, 2012-2021).
(contact: jesusmarquezrivera at gmail dot com).
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(Epilogue of my next book that will possibly be published on Amazon in March 2021...)
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vitamin C and E supplements (3000 mg and 3200 IU, respectively)
The paragraph that starts with "Between 5000 and 10,000 IU daily" is it Vitamin D? Just wondering, have you been researching the gut microbiome and it's relationship to PD?
Yes, but I've only scratched the surface a little. That's one of the issues I have to deal with. I know a little about Braak, Pan-Montojo, Bercik or Scheperjans, but only superficially.
I think Parkinson's is a disorder of the whole organism, so knowing as we already do the importance of the second brain and the intestinal flora, it makes me think that soon, neurologists will share the treatment of Parkinson's with gastroenterologists.
sorry, but the correct name doctor Antonio Costantini, a person out of the ordinary will remain forever in the hearts of those who knew him like me. Best wishes and enjoy beer.
What I see is that you are evaluating b1 in a limited context. I don't know if it will work for you or not, but the question goes beyond that single search and on HU you can find many experiences both positive and negative. In your shoes I would take a look at who, how and where this theory of b1 comes from and what potential results it may or may not give. (from the context series missed as you rightly point out, but that once opened you have to go all the way; it is the road to the truth: you cannot follow it only a small stretch.)
I've been doing it for six years, my wife has been doing it for me. 2 x 100 mg per week, thiamine hcl, no known side effects. It is a bit uncomfortable and requires a prescription; that's why many have switched to pills. IMO The current average dose is 600mg to 1000mg a day, but you can stop for less or go further. Sorry I'm hasty but I've talked about it too many times. “Too much something” for me is a key consideration that makes me quit the game.
There are various types of research and discovery. The clinical one, the scientific one and they complement each other. Here we are on a patient forum, IMO not so much rigor and precision is required, but we allow everyone to be who they are, please, be they scientists, amateurs, sick people, caregivers, naturists, chemists. We are all very similar, that is, not the same, not different.
The intention of the article and the image is to bring it to the attention of patients and families who don't know it exists. And of course to provide a basic summary for anyone who might be interested.
1. About vitamin B1, what is relevant for me is that 4 neurologists have found vitamin B1 to be beneficial for Parkinson's and other diseases. Already more than 3500 patients have been treated worldwide. What is important in the study by Smithline, a doctor specialising in emergency medicine, is that it shows that very high doses are assimilated by passive diffusion and are similar to intramuscular doses, that up to 7.5 or 8 grams a day no adverse effects appeared, etc.
His non-Parkinson's study supports the foundations of Costantini and Fancellu's research. Deciding to take several grams of a vitamin deserves a certain degree of certainty.
I find this extract a formidable contribution:
"In studies of Alzheimer's disease, subjects were treated with 1000 mg of oral thiamine hydrochloride three times a day for 2 to 12 months without any reports of adverse effects [7,25,26]. In a separate experiment, subjects were titrated up to 8000 mg per day over a 1-year period. The only side effects reported were nausea and indigestion in 2 subjects when they reached 7000 and 7500 mg per day [7]. There have been several clinical trials of thiamine derivatives for a variety of disorders that used doses between 300 and 900 mg per day in divided doses for periods up to 3 months. No side effects were reported in these studies [2,27-29]."
2. I started looking for answers in books and authors that have nothing to do with Parkinson's a long time ago. When I first read that Coimbra had used 90 mg riboflavin I thought it was a mistake. Then I found that Schoenen had used 200 mg with children with no adverse effects and I was reassured. That is what I want to convey to the reader.
Naturally the study was anchored in 2003. I find it strange that no one has tried to improve it with doses of 200 mg or even 400 mg.
3. In 2013, the famous neurologist David Perlmutter recommended in an article, in addition to a high cholesterol level as neuroprotective (HUANG 2011), a dose of 5-10,000 IU of vitamin D3.
Fullard's study is really interesting, but he also breaks the ice and mentions a fact that makes us look differently at high doses of vitamin D, already mentioned by Coimbra, Holick, etc.
To say that this snippet is pure gold is an understatement:
"A report in 2005 noted that 10-15 min of whole-body exposure to sunlight in the peak of summer can generate 10,000-25,000 IU of vitamin D3, concluding that the recommendations for vitamin D intake of 200-800 IU/day are likely very inadequate (96, 97). A study from 1977 showed that a daily intake of 10,000 IU daily resulted in serum vitamin D levels most similar to the subjects who were exposed to daily whole-body artificial ultraviolet light (53). One of the reasons often cited for giving lower doses of vitamin D supplementation is the concern for toxicity and hypercalcemia, however, multiple studies have shown that toxicity is rare and high serum levels of vitamin D are not strongly correlated with hypercalcemia (4, 98). When hypercalcemia occurs, it is often easily reversed (4, 98) One state psychiatric hospital in Cincinnati, Ohio offered all 4,700 patients admitted to the facility from 2011 to 2018 supplements of either 5,000 IU/d or 10,000 IU/d of vitamin D3, many of whom were on the supplements for over 12 months (4). Serum 25(OH) D levels were frequently above 100 ng/ml for patients taking doses of 10,000 IU/d, with a range up to 202 ng/ml. None of these patients developed hypercalcemia, nephrolithiasis or other adverse effects and the authors concluded that long-term supplementation at doses of 5,000 to 10,000 U/d appear safe (4)."
4. The set of studies by Chistine, McCaster, Schaffner, etc., on vitamin B12 seems to me to be a profound revolution on its own.
These phrases have become "mantras" for any study: more studies are needed, etc. They are true, but they form a vicious circle. I prefer: this is what it is because it works and we will understand how it works in the future. In the meantime, millions of sick people and their families will benefit... And they will not live worse than they do now...
Back in 1971, Manfred Karobath carried out a study on the multiple deficiencies of Parkinson's patients, later extended by Charlton, Hinz, etc... Are we still waiting for more studies 40 years later? Or do we cut the Gordian knot?
The videos by Perlmutter (GSH), Coimbra (B2) and Costantini (B1) often show patients with many years of Parkinson's and levodopa.
If I had advanced Parkinson's I would try to restore as much glutathione as possible, which is as low as 2% in the most advanced stages.
Kulisevsky and other Spanish neurologists wrote a paper in 2013 to treat patients in advanced stages and recommended dissolving a gram of vitamin C in water and taking levodopa with it throughout the day. Vitamin C improves assimilation and reduces damage from oxidised levodopa remnants in dopamine-producing neurons.
Food, normal oral, liposomal oral and parenteral vitamin C are very powerful therapies, and together with flavonoids and zinc, even more so. And it recycles glutathione and increases its synthesis.
Another paradox of today's world is that these therapies are more readily available in beauty clinics than in general practices.
Sorry to hear about your diagnosis , David. There’s so many holistic ways since it’s early for you. Have uuu tried seeing a functional medicine doctor ? Acupuncture ? Glutathione injections. NONE covered by insurance FYI
Bravo and well said. I don't know what was said but I've been on the receiving end of spite and sarcasm on here and I'm glad to see you calling it out. This is a wonderful resource and I'm grateful for it but it is also an opportunity to test ones resilience as if we aren't being tested enough. BTW, I am not presently doing the high dose B thing but I have found benefit (I little improvement that I attribute to removing gluten, dairy, and sugar from my diet. It was seriously the pits at first cooking yummy food for my family that I can not eat while I have mushrooms and kale but I have gotten used to it faster than I anticipated.
I have read from multiple reputable sources that the gut microbiome plays a big role in PD. I recommend looking up Dr. Perlmutter and what he says about Parkinson's/keto. Cutting out gluten was my first step. Instantly deflated me. I was not aware of how much of my "puffiness" was inflammation. I highly recommend trying it. Then I cut out sugar (that was the pits) Brain fog started to lift a bit. Then I cut out dairy. I cried that day bc I had been telling myself, "well, at least I have cheese." But I do believe it has helped. Then I added MCT oil by Garden of Life. My tremor reduced. It was a definite improvement. I have a hubby and two kids who I cook for daily. I watch them eat the delicious meals I miss while I eat something I am sick and tired of and do not like very much. Oddly enough though, I have come to realize that the food I thought I needed to be happy did not make me as happy as I thought it did.
CC, I was (still am) a milk lover so when I dropped my 2% I was lost as I replaced it with Soy "milk", disgusting ! then we found our butcher was getting Avalon brand ORGANIC milk products, I started with 2% , but no luck, the headache was still rearing after consumption, same with skim, so the last option was Whole Milk , to my surprise no headache! You get the old style milk that you have to spoon out the top if you are like me trying to keep my fat intake down. I am convinced that it is something to do with the Homogenizing process, heat or mechanical or ??
You might try and see if you get a low grade headache too.
The higher fat content of whole milk vs. 2% is why you respond better to it. Casein and lactose cause inflammation. The higher the fat content the better.
Anyone on this board get Covid yet? My husband a PWP and I got it from our 1 year grandson who was asymptomatic. My case has been relatively mild (day 7). He is on day 3 with low fever, so far good pulse-ox, but tons of pain. I think the inflammation of the virus is very hard on PWP who have PD stiffness.
David, Your questioning and willigness to see the broad picture is commendable. We need an open mind and often a healthy skepticism or we become convinced by the loudest voice. Here is a link to give a fuller picture of one neurologist quoted above.. i do wonder about his motivation
I’ve just started reading your work so forgive me if you have covered this. I was wondering if Parkinson’s could be caused by thyroid issues? People with thyroid issues have gut/microbiome symptoms, lose enzymes necessary for body to function well, have a dysregulation of neurotransmitters are more sensitive to effects of pesticides and toxins etc etc. People can show normal on tests but from lack of enzymes and nutrients etc have a resistance to thyroid hormone similar to insulin resistance, anyway I’m certainly not sure about it just musings. Thank you very much for your work
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How many know that H2, hydrogen water has positive effects for those with Parkinsons? I didn't know.
Hence forth, things I shall ignore.
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