My wife has PD but we are in this thing together she is a strong woman and I am 100% supportive but not perfect I lose my composure at times and it makes me feel bad when this happens.
We both do not not want to depend on medication she tried sinament and she takes no so call medication.The approach for her recovery started with stem cell therapy and laser lights about 1-1/2 years ago we traveled to Germany. The result was not a instant fix and she still has symptoms. We continue on the road to recovery by approaching the issue of how to recover through supplement therapy to increase the body's dopamine biosynthesis. The approach is to repair the cellular development which affects the neurological system the body has the ability to repair and build new cells this where amino acid supplements come into play. Exercise is also very important this is how we evaluated her progress. I have hope that she will repair and the more we learn the more it becomes obvious.
We never talk about what she can not do just take one small goal at a time when we achieve our goal we move on. My advise is always do what you can commit to 100% if that does not work find something that will work.
Doctors are limited and will not inspire you to self recover this why 1000s of people are taking medication that will make the condition worse.
My opinion is if the main focus was to self repair there would be a lot less pain in the world.
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Here is a link to a supplement treatment that many forum members have found some symptom relief from. The protocol is referred to as HDT/B-1 and consists of daily supplementing with vitamin B-1 which is also called Thiamine HCI. Here is that link that will answer most of your questions about it:
Glycinate: relaxing, gut friendly, good for nerve pain
Citrate: relaxing, reduce muscle pain, good for kidneys
Taurate and orotate: cardiovascular health
Chloride: detoxifying and good for kidneys
L-Threonate: The best for brain injuries, depression, anxiety, memory, learning, neurodegenerative disorders, and etc. (found insufficient backup data regarding this product)
drjockers.com/best-magnesiu...
Once ingested magnesium oxide is poorly absorbed by the body (approximately three-fold less than magnesium citrate).
Magnesium glycinate (or diglycinate) is much more effective than magnesium oxide, and absorbed in different areas of the gut compared to traditional magnesium supplementation (14). It appears to be very effective, but not the best
Magnesium glycinate is the current best form to take due to high absorption and no digestive side effects. Magnesium citrate is also very well absorbed by the body but some people experience diarrhea when taking it. Others, welcome it as a relief for constipation. Avoid taking magnesium oxide as it is not well absorbed by the body; research shows it is no different than taking a placebo.
Beware of combination type products. First form listed is most prevalent by rule, but could be 90% of product.
The Mayo Clinic has similar, yet slightly lower, recommended guidelines — teenaged and adult men should ingest 270 to 400 milligrams (mg) of magnesium each day.
For optimal effectiveness, avoid combining a magnesium supplement with the following medications: aminoglycosides, antibiotics (ciprofloxacin, moxifloxacin, tetracycline, doxycycline, minocycline), blood pressure medications, calcium channel blockers (aamlodipine, diltiazem, felodipine, verapamil), diabetes medications, digoxin, diuretics, fluoroqinones, hormone replacement therapy, labetol, levomethadyl, levothyroxine, penicillamine, tiludronate and alendronate, amphotericin B, corticosteriods, antacids, and insulin. Seek advice from a healthcare professional before considering taking magnesium at the same time as any of these medications.
healthanchor.com/best-magne...
Taking zinc at the same time, or in the same pill, will limit magnesium absorption in the intestine. Some healthcare professionals recommend a B-vitamin complex or a multivitamin containing vitamin B6 to help with magnesium absorption.
Magnesium threonate. This is the most interesting form of magnesium, found only recently on the market. Basically, it’s magnesium chelated by two molecules of threonate (a metabolite of vitamin C). In research, the threonate shows outstanding bioavailability and the lack of side effects associated with gastric neurosis. However, this is not the main feature thanks to which this form of magnesium is so sought-after recently. Thanks to its chemical structure, it’s able to effectively cross the blood-brain barrier, thereby increasing the concentration of magnesium in the brain. Thanks to this, we get an increased effect of supporting the nervous system, including the most cognitive skills, and reducing the intensity of anxiety.
Malate. This is another form of magnesium, distinguished by an organic combination with malic acid. Its bioavailability is estimated at around 30%. In addition, the malic acid formed in the metabolism may have a positive effect on the body’s functions (affects the support of energy production, which positively affects motor and mental fitness).
Magnesium chelate (magnesium glycinate). It’s a combination of two molecules of the amino acid – glycine, with magnesium in the chelate bond (also called tick binding). Due to the specific structure of the compound, magnesium is protected against too rapid degradation in the stomach, which allows for smaller losses of substances that will eventually be absorbed in the small intestine. This affects the greater bioavailability of this form of compound (amounting to 24% in studies).
Magnesium-L-threonate. Scientists at the Massachusetts Institute of Technology (MIT) found a novel way of overcoming the problem of getting magnesium loaded into the brain due to poor absorption. These researchers tested a unique compound called magnesium-L-threonate and found it boosted brain magnesium levels by an approximate 15%. When comparing various forms of magnesium, they found that magnesium-L-threonate had the highest bioavailability and brain magnesium-loading ability. As a result, studies show that magnesium-L-threonate improves brain plasticity, leading to direct and significant improvements in memory, learning, and cognition.
Elevating brain magnesium levels also reversed impairments in synaptic function and long-term potentiation (the cellular equivalent of learning). These studies make it clear that elevating brain levels of magnesium helps to improve cognition by improving plasticity (the ability to make connections between brain cells) and long-term potentiation (the strengthening of those connections).
lifeextension.com/Magazine/...
The loss of brain plasticity is at the heart of age-related loss of cognitive function. As our brains lose flexibility, we lose the ability to learn new concepts, to make sharp judgments, and to develop new skills. Loss of brain plasticity is implicated in both the “natural” loss of brain function with aging and with accelerated cognitive decline as seen in Alzheimer’s and other neurodegenerative diseases.
Restoring brain plasticity has become a major focus of neuroscientists aiming to slow or eliminate the loss of brain function over time.
Studies show that boosting brain magnesium levels dramatically renews the ability of brain cells and, in animals, to form new memories and discriminate between existing ones. But conventional magnesium supplements are inadequately delivered to brain tissue, challenging our ability to effectively raise brain magnesium levels.
The development of magnesium-L-threonate appears to have shattered that barrier. Studies show that this compound enters brain tissue more effectively than other magnesium preparations, and is significantly more effective at restoring memory functions and brain plasticity in numerous animal models, including those of Alzheimer’s disease.
The positives: no bradykinesia, I cut my food with a knife, no button difficulties, brush my teeth now w/o needing elect brush, more strength. Getting in and out of bed, turning over is easier. No more constipation. Parkinson's progression stopped. Suppressed all motor and non-motor symptoms...
Entering my 8th year post diagnosis and have not fallen, not once, to the surprise of my neuro.
2 x day (8 am 2g, and 2 pm 2g) vitamin B1 (as thiamine HCL) 500mg, easy swallow capsules.
Magnesium L-Threonate 2,010mg per day.
B1 Thiamine therapy reference / stop progression, suppress motor and non-motor symptoms:
(Thiamine HCL is oral substitute to injecting B1) 2 x day (morning 2g and at lunch 2g)
Doctor Costantini strategy that I find helpful "thiamine hcl stops the progression forever...".
Parky people say the first five years is your honeymoon stage with Parkinson's. After that, progression more rapid.
I have gone from slow motion to normal motor action since joining the growing number of PwP that have started B1 regimen/protocol. –
Doctor Costantini - “Why is this? Because there is no medicine or drug that is able to affect all of the organs, whereas all of the organs function thanks to Thiamine. An important detail”, adds doctor Costantini, “the Thiamine therapy brings no collateral damage with time”.
Fantastic! That's what everyone wants. Some people have a 'herd' mentality and I believe are afraid to try something outside of the box.
"Parkinsons progression stopped" is a massive claim (If a phase 3 clinical trial achieved this, it would be international news), and it isn't at all consistent with Roy has said in other recent threads regarding his condition.
When something works, and there is no harm, why wouldn't you try it? It worked for 3,500 patients. Why not consider it? You won't see phase 3 trials done with natural substances. There's little money in it. At one time, the pharmaceuticals wanted to control all natural substances. It's wonderful they don't.
I hope your wife knows she can bring the worst to you, along with the best. This is such a perfidious disease. Like an iceberg, what people see from the outside is only a small fraction of what we experience on the inside. I think with any disease there is always a small part of us that blames ourselves. A small kernel of shame that we are not stronger or strong enough to overcome but that can be a cruel viewpoint and ultimately not beneficial. It can seem counterintuitive but I think that oftentimes through acceptance we get the most strength to bring the best of ourselves to the battle. My heart goes out to your wife and I certainly wish both of you the best.
The natural occurrence of the equivalent of sinemet. (levodopa and cabidopa, L/C) is fava beans (vicia faba) and velvet beans (mucuna pruriens). What's difficult is you don't know how much L/C is in the beans. You cans search for these on this site for more details.
Sorry, wrong, fava contains formed dopamine which can not cross the blood-brain barrier, whereas l-dopa does. Fava is limited to outside the CNS. Matter of some significance.
See Fig. 3. The influence of various processing methods on l-DOPA content of faba bean leaves and seeds. Values are means of two experiments and three replications. The bars are representing standard error of the means.
That's L-dopa, product of processing and production to an extract. That's not fava, it is L-dopa. As I said. Fava is simply the base stock, which you identified as the supplement. See, if you claim not to be "technical," you are going to make these mistakes and it is best to not mislead people with your declaratives without failing to represent that, you could hurt someone who doesn't know to nail you down, and people will mistake your unqualified assertions as professional when they are not. Professionals and scientists do not make such obtuse and absolute statements the way you do. It is a hallmark distinction. For example of the difference, reference when you and Sharon differ. It's a tiny little irritating matter called ethics. What is it about you please that you have yet to disclose that will allow proper contextual qualification of your remarks so that people can properly gauge how much to trust you about things to put in their bodies? Thanks.
Fava beans contain levodopa, the same chemical in Sinemet, Madopar, Dopar, Larodopa, and other levodopa-containing medicines used to treat PD. In fact, the entire fava plant, including leaves, stems, pods, and immature beans, contains levodopa.
Quote: The amount of levodopa can vary greatly, depending on the species of fava, the area where it's grown, soil conditions, rainfall, and other factors. It appears that the young pod and the immature (green) beans inside the pod contain the greatest amount of levodopa, and the mature, or dried bean, the least. Three ounces (about 84 grams or ½ cup) of fresh green fava beans, or three ounces of canned green fava beans, drained, may contain about 50-100 mg of levodopa. If using the young pod as well as the beans, the amount of levodopa may be greater than that in the fresh beans alone.
My neurologist says he has a patient that controls her PD with completely natural means, no pharmaceuticals. Her main source of meds is fava beans. She also uses exercise and other natural means.
I looked over your article and I do not discard any information that would help recovery.The article is written in my opinion for academics that live in a test tube reality. Fava deans have the chemical make up to encourage production of dopamine this very good and it is mentioned that it is helping a person with PD.
I have not made or know of any study that will recognize that what my wife takes as I have mentioned will do as your Doctor claims.
My approach is based on basic science that cells can be repaired and correct the damage done to the brain. The brain can be healed by enhancing the body with amino-acid supplements. I feel to do this a combination of therapy must be done as I have mentioned in my routine. This is my approach if a supplement helps than I will see how and when it does the best job and take advantage of it's value. I only access supplements that are sold by companies that are recognized and offer a description and reviews plus I do my own research.
Medical information is mostly based on getting results that the sponsor of the study will benefit. Millions and Millions of dollars have been spent not only PD research but many other diseases with results that produced more medication with terrible side affects like those given for PD .
Note my neurologist didn't say fava beans would heal PD, but that they would work as L/C instead of prescription L/C, but not without difficulty determining dosage. Some people, without evidence, believe that the other nutrients, such as antioxidants, in the fava beans will heal PD. I know of no support for this. However, the beans and leaves have amino -acid supplements often referred to as anti-oxidants.
Thanks that is so positive, I too believe the body can heal itself provided it has the correct nutrients and lifestyle changes... Does anybody have suggestions that actually work to reduce tremor?
I have seen information that a treatment called FUS can heal tremor this technology was developed in Israel and other countries offer the treatment. My wife suffers from movement disorder presently FUS only helps with tremor. I can pass on the information I acquired when I first learned about the procedure. My wife takes a routine of supplements this is also helpful. I have heard from many PD suffers that this disease can be beaten back. I wish you good health and a speedy recover.
The medical name for the procedure is explained in detail by the company that invented the technology insightec.com. This is a company with headquarters in Israel. I live in Israel and contacted the hospitals that offered the treatment hoping to get treatment for my wife however presently this treatment is used to treat tremor no other PD symptoms. Do a search and see if this would be good for you. I have attached the supplements that have helped to control the PD symptoms for my wife. I can help with more information if you are interested
Note amino acid supplements like Tyrosine and Creatine are only needed for a vegan or low protein diet. For example creatine was first isolated in cheese. These are common proteins in meat. Otherwise, one need to look for vegetarian sources if not supplemented.
The majority of your body's SAM is used to create creatine constantly, so supplementing Creatine is one way to spare methyl donors for those who are under methylated, so supplementation can be quite beneficial, despite it being more popular with muscle builders.
The study that was done with Mannitol as far I knew really never successfully showed that it does what it claims help to get medication past the barrier into the brain. My wife tried this and I was in touch with the person directing the study.
Sorry, it didn't work for your wife. My husband has been taking it for quite a while, and his hyposmia has been considerably improved. He has also displayed partial arm swing. However, I don't know what exactly contributed to his improvements as he takes different supplements/minerals, but most importantly Vitamin B1.
Some people do seem to find benefit from mannitol. It seems like such a simple easy assist, one of those things you just have to be grateful for. One of those things in your very very special master list of things that work that you etch into your wall and build up over the years.
I support your feelings that self-repair is the only way to go, but you do not mention the one vital protein that makes that happen!
The protein is called GDNF, (Glial Derived Neurotrophic Factor). Glial cells are the cells that are attacked by Parkinson's in an area of the brain called the substantia nigra. They produce this protein which repairs those Glial cells, with the result that the brain produces more dopamine and we start to get better.
What causes those Glial cells to produce that GDNF?
In my opinion that happens when we do FAST WALKING. I have been doing fast walking since 1994 and I have been Free pf Pd Movement symptoms since 2002.
If you would like to know more about it then look at my website reverseparkinsons.net and contact me. I do not charge for my advice. I have lived a 'Normal life since 2002. I am now 85 years old,
Hi Dholpayer. I have been fast walking since 1994. I walk every second day. I initially started by walking for 15 minutes, slowly building up by an additional 5 minutes every second week. When I go to one hour, I stuck with that time and only stopped in 2020, at the age of 85, when I was unable to overcome Atrial Fibrillation. At my best I walked 10 kilometres in less than one hour, at the age of 64.
If you are going to carry it in your pocket, put it in airplane mode until you need it. We turn off our wifi and put our phones in airplane mode every night. We used to have phones that could only be used in our homes. Now, we feel we have to be in contact with everyone all the time. It could be causing A-fib.
If you are carrying it on your body, let's say in a pocket, it is emitting EMF's all the time. Those who are more sensitive to EMF's can have a problem with that. Also, turn your WiFi off at night and put your phone in airplane mode. That is the safest. Our brains regenerate at night.
We bought your book. He also is experimenting with B1. He does ozone and infrared saunas, PEMF mat therapy, and near infrared light treatment in his nose. (Sounds crazy, doesn't it?) We will do whatever it takes. I am a researcher.
Yes, if we could just get a decent way of getting it and deliver it in to the proper sites, holy grail for sure. If we can just get those synucleins transported out or broken down. John's report is wonderful and probably should be done in any case, to the extent that people can. Yet it remains a single case report, over all this time, where else do we hear of any other such cases?
There is plenty of information out there to back up the fast walking. If you contactv me via my website reverseparkinsons.net I will give it all to you.
So start, if you can, today regardless. See "where" it takes you (sorry about that). Can't hurt (i.e., Phase 1 complete right there, passed already, case of 1. Pretty good right out of the box. Lots of substances fail Phase 1.).
Thank you for your post! I agree that the PD meds can make you worse rather than better. I spent nine days in the Trauma ICU at U of U Hospital because I passed out and fell hard on my head on our tile kitchen floor...due to too much C/L that caused my blood pressure to plummet. Other PD meds I’ve tried made me nauseous, made me pass out, caused panic attacks. I only take Selegiline now...and vitamins. I’ve had PD for about 7+ years.
A lot of people swear by mucuna and when little else helps and when prescription meds are too much in some respect or bad side effects, or lose their effectiveness. Nearly universal, few side effects, few risks that I can tell, rather remarkable. Not everyone, and not perhaps enduring each case it helps, it's a preparation of L-dopa by another process, derived from the dopamine produced by fava beans. Rumored to go well with liver and a nice Chianti.
What a wonderful post! I am also a caregiver, working with natural supplements, (such as mucuna, and amino acids), who sometimes runs out of patience with my husband, who is a really good man. I just brush myself off, and continue helping him, while reminding myself to be more patient.
My wife understands that it is possible to get frustrated and she puts up with me. We are in this thing together and with hope we will beat back PD. Mucuna is not a fix for my wife she took it for a long time and it helped a little nothing permanent. We also use supplements and I am learning what supplements are best for specific aliments this is very helpful. She is off sement for over a year and is not getting worse.
Thank-you for your kind words and may your husband have a speedy recovery he is blessed to have a wife that stands by him.
There are formulas for taking this. Atrazine is a hormone-disrupting pesticide so powerful it can turn male frogs into female frogs with viable eggs! In humans, atrazine has also been linked to cancer, shorter pregnancy and hormone disruption.
The EU banned atrazine almost 50 years ago, but the U.S. still allows more than 70 million pounds of atrazine to be dumped on American farmland each year. You take 10 times the tyrosine as the 5-htp. Also L-Cystiene is taken, as well. The 5-htp helped my husband with nausea.
Look at Dr. Marty Hinz's protocol It is a balancing act. My husband has just started showing non motor symptoms, so we are also taking thiamine, B1.
There is a protocol developed several years by Dr. Marty Hinz. If found if you take too much mucuna as opposed to not enough tyrosine and 5-htp, you will be out of balance. Dr. Hinz has a diagram that shows how they need to be in balance. I have since read 10 times more tyrosine than 5-htp. That is what we have followed on our own for years. Do some research to find what works for you
My wife takes velvet bean extract 350 mg Mucuna pruriens seed standardize to contain 15% L-Dopa 52.5 mg. This is for her is a good balance it gives her a boast and helps with pain in her legs. She also takes tyrosine this is part of our routine she takes Mucuna pruriens combination only as needed.
I started on amino acid therapy( Dr. Hinz Method) at first also. I did not respond well to the Macuna ( The natural form of l-dopa ) I eventually had to take the prescription of carbidopa/levodopa. Again I have side effects but they are different. In the morning I go without taking any medication as long as I possibly can into the early afternoon before I start my treatment My morning time is the best part of my day. Once I start the medication my energy goes down the dyskinesia starts and i’m pretty much down for the day. I also hate being dependent on medication it is totally against my nature. I miss my natural state of being. Right now I’m looking for supplements that help rid the brain of the build up of proteins ( Alpha synucleins or Lewey bodies) in the brain. These nasty proteins can contribute to the progression of PD. As well as Alzheimer’s disease. One of these supplements is Fisetin 500 which goes beyond the blood brain barrier and helps clean up these proteins.
You may want to add this to your list of helpful supplements.
Sometimes when I take a high dose (especially with nattokinase), I literally feel tingling around my head and almost feel dizzy, so I'm sure it crosses the BBB.
Thanks for the info. Many people have said it is good to detox to get toxins out of the body. I will look for an explanation how Fisetin 500 goes beyond the blood brain barrier. Did you ever hear of Dopa Mucuna and Dopa Mucuna Pruriens 15% L- Dopa my wife takes both.
See my response above and look into Serrapeptase, and possibly combine with Nattakinase to potentiate the action. Avoid taking them with blood thinners including herbs/supplements.
I use Dr's Best formulas. I noticed tingling a few times with two 120K capsules of Serrapeptase and one 2K FUs of Nattokinase, so 3 pills at once, up to 4 times a day on completely empty stomach. Admittedly this is a massive dose, but I was self experimenting and you shouldn't attempt such without precaution. It's anti-inflammatory as well, beneficial for various pains.
Extremely low toxicity (if any) is reported with Serrapeptase, but you should start a lot lower at 40k for a while to see if you experience any adverse reactions since it may exacerbate preexisting health conditions (releasing pathogen biofilms, ulcers, etc).
Thank you for detailed information and for your educational posts. I haven’t look at enzymes before (except lab bench:)) and googled them. Seems something to explore for their superior anti-inflammatory properties.
Yes, many report huge benefits for back/joint/muscle pains. It's very low risk if you start slow, and without the side effects associated with toxic pharmaceutical drugs.
I am hoping for additional benefits. Was tested by a functional lab for leaky gut with positive results. So, apparently I’ll need a digestive help to break large molecules inside intestines before they permeate into bloodstream.
With a leaky gut, definitely start slow with the enzymes.
Also it is very important for you to reduce carbs/gluten from your diet, since it is an indication of candida albican overgrowth that thrive on sugar/carbs.
You might want to try eating more meat and vegs for a period to shift your gut microbiome.
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Your self evaluation 
Does Anyone With Parkinson's Experience Panic Attacks?
