This is directed at several folks on this forum who are following the Amino Acid therapy of Dr. Hinz for PD. It recommends a daily dose of 300-600 mg of vitamin B-6. But this is risky. It exceeds the Tolerable Upper Intake Value (UL) of B-6, which is
100 mg/d for adults over 50. With chronic doses above this limit, one runs the risk of neuropathy (nerve damage).
So far, knock on wood, I have avoided the burning or tingling sensations that signal neuropathy, but what woke me up is a blood test ordered by my neurologist. They found my B-6 value is more than double the top value in the normal range (20-125 nmol/L). You can bet I will immediately cut back on this vitamin! (But, for now, I plan to continue following the rest of the Protocol.)
If you know anyone on the Hinz protocol for PD, please urge them to at least have their B-6 level tested. You may save them a heap of trouble.
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Yes, it works well . . . when I bother to follow it. (Getting out my applesauce and digital scale, measuring out the right quantities of powder, and so forth, is a 10-15 minute nuisance.) If I avoid eating protein with it--as a vegetarian, I am fond of snacking on nuts--it takes about 90 minutes to kick-in and then I have 2 blissful hours without the darned tremors, which at present are my most troubling symptom. I also try to eat healthy and work out at the gym 2-3 times per week.
By the way, contrary to some deceitful adverts I have seen online, I do not at all believe the protocol is a cure for the disease. The underlying disease still gradually progresses, but hopefully minus all the dreadful symptoms/side effects commonly attributed to the powerful PD drugs.
What kind or brand of mucuna are you taking ? How much of it ? How are you coping with your tremors ? I also have a pd with tremors on both sides and trying various natural products without much success....
Hi Marcet, Taking "Mucuna Powder 40%" (by CHK Nutrition) required by doctors using the Hinz protocol. (It's not cheap: one cannister of 270 gm costs me $218.) I have been taking 4.4 gm /dose, which contains 40% X 4.4 gm = 1.76 gm of L-Dopa. Each dose of the Hinz protocol gives me 3-4 hours of "on time" free from tremors. It lasts about an hour longer when I take these meds on an empty stomach (i.e., fasting). I take 1-3 doses per day.
If you read the writings carefully nowhere is anyone claiming a cure. The only ones claiming a cure are the hear-say people that really don't know what they are talking about, such as those found in this blog.
Have you heard of the new clinical trial called Pasadena project that hopes to halt the progression...I heard from dr Carolyn tanner from UCSF. Ineligible for study if you taken sinemet, levadopa
No, haven't heard. Wonder if that prohibition also includes natural levodopa from Mucuna Pruriens. Do you have any links where everyone can find out more about that trial?
What is the cost of the supplements for this program? Has it effected your kidney function at all? Do you get that monitored on a regular basis with your doctor?
Cost about $500-$800 per month. Have not checked kidney function--no concern in this area was expressed by anyone. The supplements are all G.R.A.S. (generally regarded as safe).
It is because you are using the wrong kind of B6. Pyrodoxine is toxic in high levels. You need to take P-5-P which is the coenzyme of B6 which is not toxic at all. Pyridoxal phosphate, the active form of vitamin B₆, is a coenzyme and it the correct form.
Thank you for the insight. In fact, I have been using P-5-P. Tables of Upper Intake Levels (UL) do not distinguish between the several forms of vitamin B-6. Presumably P-5-P , the active form of B-6, is the one floating in our blood, regardless of which type you ingest. it is concerning that my blood serum levels of B-6 were so far above normal.
"ConsumerLab.com Answers
Question:
Is P-5-P really better than "regular" vitamin B6?
Answer:
Pyridoxal-5-phosphate, sometimes called P-5-P or PLP, is the active form of vitamin B6 (pyridoxine). Most supplements provide the pyridoxine form of B6, although some provide pyridoxal-5-phosphate, or a combination of both. Taken at recommended doses, both forms appear to be relatively safe and have similar bioavailability for most people. Although pyridoxal-5-phosphate is sometimes promoted as more beneficial for people with diabetes, there do not appear to be any studies in people to support this.
Incorrect. As I stated. Pyrodoxine (the normally sold b6) is toxic in elevated dosages. P-5-P is not and can be used safely at the levels recommended in amino acid protocol.
I am happy to hear that, but can you cite a reputable source backing up your assertion? Consumer Lab knows vitamins very well and as you see all they can testify is that "both forms (of B6) appear to be relatively safe." I'd rather look before I leap
If you study the science there is no good articles establishing LD50 or any other toxicology relating to B6, the National Health Service on its website states toxic concerns start when using 1,000 mg (1 gram) per day for a year or more. Those that run and hide at the thought of administering 100 or 200 mg per day of B6 have no first hand experience in the area in managing B6 deficient patients and are merely clinging to urban legends. As far as B6 test is concerned I believe it is of no value. It is based on the Xanthurenic acid test of 1943 which makes no room for renal processing of B6. I don't believe there a an accurate B6 test available.
Please post some peer-reviewed literature to back up you toxicity claims. As far as I know there is none in the world, only urban legends like you are trying to promote.
If you study the six forms of B6 and how they interact the urban legend that you must use P5P is not true. Furthermore, in the scientific articles which discuss the active form of B6 it is not referred to as P-5-P, it is referred to as PLP. Only those who have read no B6 science refer to it as P5P.
I do not use the Hinz protocol, mainly because I require carbidopa in a 1:4 ratio with levodopa for the levodopa to exert its full effect. One misleading statement Hinz makes is that carbidopa has the sole FDA approval for reducing nausea caused by levodopa (hence the name of the combination of carbidopa/levodopa = sin - emet = without vomit). Although true, the fact is that carbidopa also increases the amount of levodopa that gets into the brain by inhibiting the breakdown of levodopa in the blood. I do not get any nausea any more, so l could take pure levodopa with no problem, but when I tried to reduce from C/L 25/100mg to 10/100mg the reduced carbidopa pills had very little effect and left me frozen. So, while carbidopa is approved only for reducing nausea, it has the more important effect of boosting the effective levodopa dose you take. Hinz constantly makes that misleading statement, and that may be because patients might demand some carbidopa with all those many bottles of mucuna powder (levodopa) they have to take. I take 50mg of B6 per day and alternate days with 50 mg of P5P, (pyaridoxal-5-phosphate, an activated form of B6), in case Hinz is right about carbidopa's inhibitory effect on B6. I also take 1000 mcg of B-12 (methyl-cobalamine not cyano -cobalamine which contains trace cyanide) because levodopa increases a toxic waste amino acid called homocysteine. Sure enough, mine was elevated, so I started the B12, which brought down my homocysteine to normal but I did develop mild peripheral neuropathy in the feet (reduced vibratory sense), a consequence of hyperhomocysteinemia. Never again!
Hi. I'm new to this forum and I am curious about your B6 intake. I've done a lot of reading about PD and carbidopa/levodopa, (my dad has PD) and it is my understanding that B6 blocks the effectiveness of L-dopa. The fact that carbidopa binds to B6 and deactivates it is one of the ways it helps L-dopa cross the blood/brain barrier. It is a real problem that so many things seem to interfere with L-dopa working as we need it to -- B6, protein, dairy, too much food in the stomach, etc., and I feel that is the reason my dad's Sinemet seems to work sometimes, but not so much others. But I do have concerns that the carbidopa is depleting his B6. I have lately been giving him 25mg of B6 at night, but I am afraid that it's just one more thing that may inhibit the L-dopa and cause him not to respond well to the medicine. I know that B6 is readily available in food, but neither those sources nor the supplements will help if the carbidopa is blocking it anyway. What are your (and dumpelkin's) thoughts on this, and have you noticed any difference in how you respond to your c/l since you've begun your B6 regiment?
This one takes the cake, B6 is required to metabolize L-dopa to dopamine. A central problem with Parkinson is inadequate dopamine levels. This non-expert is claiming the B6 blocks L-dopa. There is a reason you need to read peer-reviewed journals for basic science information. They may not be perfect but at least the science is not made up like it is in these blogs. B6 binding of carbidopa has nothing to do with L-dopa movement across the blood brain barrier which it freely crosses. Instead of being afraid find a doctor that knows what he is doing and get care. There is no way you will be able to treat your dad.
I guess you are a doctor. My husband suffers from PD and we have been trying to get a doctor qho can treat him following Dr. Hinz'z protocol in Spain or via Skype. Could you suggest me any doctor for us? Thanks alot.
In response to Parkinsondoc: without carbidopa, levodopa breaks down in the body before having a chance to reach the brain and turn to dopamine. B6 causes the drug to metabolize to dopamine while still in the stomach and bloodstream, and dopamine cannot cross the blood brain barrier. The carbidopa in Sinemet irreversibly binds with the B6, allowing the levodopa to cross the blood brain barrier before metabolizing, therefore, the carbidopa binding with the B6 absolutely affects whether l-dopa gets to the brain. Without carbidopa, massive amounts of levodopa would need to be taken so that some of it gets to the brain. Conversely, carbidopa can also cause a depletion of B6, which, as you said, is needed to transform l-dopa in the brain to dopamine.
I do not get my "basic science information" from blogs, as you suggest. The information I offer is readily available in scientific journals if you care to do some research.
Kimiata90, your explanation of the role of B6 in the peripheral system jives perfectly with what I have read. But here is the puzzle: it does not seem to agree with what I experience. I take 100 mg of P-5-P (B6) along with L-Dopa (from Mucuna), tyrosine , and cysteine. I do not take any Carbidopa. In spite of this high dose of B6, the L-Dopa must be reaching my brain because I experience several hours of relief from tremors and dystonia. Currently my dose of L-Dopa is 1.44 gm, which I do not regard as "massive," though it is 14 times greater than in a Sinemet tablet (100/25 C/L). I should add that I do not experience any nausea with this protocol.
I could spend all day researching this kind of stuff and then trying to understand the scientific stuff I find, lol! I am really happy that it's working for you. I do think the B6 is important and carbidopa does nothing positive for your health other than alleviating symptoms, so if your regiment is allowing the levodopa to do its thing, that is awesome. I do wonder if it might be because of the relatively high dose of L-dopa you're taking. Maybe 100mg of B6 just can't cause that much levodopa to metabolize before it reaches the brain. Out of curiosity, did you have nausea in the beginning, before your body adjusted to so much L-dopa?
Hi Kimiata, Nausea? Yes, indeed! The very first time I took the Mucuna, I felt nausea for about 10 minutes or so, and I blanched, looking as though I were going into shock. (I think the queasy feeling triggered anxiety and this is why I turned pale.) After that first time, the nausea never came again. If it had been a recurrent thing, I probably would have given up on the Hinz protocol after a few tries. (In those early days--two years ago--my dose of Mucuna/L-Dopa was two-thirds of what it is now.)
No quite truly. Without carbidopa, benserazide, or the Hinz approach about 85% of L-dopa is metabolized to dopamine by the liver peripherally. When giving only L-dopa about 15% makes it to the brain. There are other approaches to inhibit peripheral conversion to L-dopa to dopamine invented by Hinz, et. al. These are approaches that do not deplete the B6 of the body secondary to irreversible binding of carbidopa by B6. The worst thing about irreversible binding of carbidopa to B6 and B6 enzymes is that it compromises dopamine synthesis, this in turn makes the symptoms of Parkinson's disease worse.
Instead of simply correcting the previous commenter's misunderstanding, you seem to feel compelled to engage in swaggering egotism which nullifies any benefit from your posts.
In actual fact B6 taken with carbidopa / levodopa medication does interfere with getting dopamine to the brain, for the reason that B6 binds to and inactivates the carbidopa. So the carbidopa cannot do its job preventing levodopa from being turned into dopamine before it gets to the blood brain barrier, where it is blocked.
So kimiata90 was correct overall, just failed to understand the details.
Too bad you don't know as much about physician care of Parkinson disease as you think your do. Comments like yours only hurt people getting care from licensed physicians. The Hinz protocol is very complex. Anyone who tries to self treat has a fool for a patient and an idiot for a doctor.
Hi Parkinsondoc, I appreciate your numerous comments. But it is usually not obvious to whom they are addressed. The way the system is set up, *several* people in the thread may receive an alert that you have replied to them. If you are just scattershooting for benefit of the collective, well and good. But if you are actually addressing someone in particular, it will greatly focus your messages, if you preface each one with the name of the relevant party . . . such as "Hi dumpelkin, . . ." Then those who are targeted will perk up their ears and pay attention. They may even reply.
You can be happy with your carbidopa for now, but in a few years when you Parkinson's disease symptoms crash let's see what you are posting on the internet. The combination L-dopa carbidopa is great at symptoms relief for a year or two then it is time to pay the piper. Contrary to your many inaccurate assertions there is no, "pure form of L-dopa" available, none. All prescription L-dopa is combined with carbidopa in the USA. Carbidopa does nothing to boost the mechanism of L-dopa action, it binds irreversibly to B6 and B6 enzymes in the body. In case you did not complete biochemistry in college, over 99% of chemical reactions in the body are reversible. Irreversible area reactions are generally associated with great harm to the body. In this case carbidopa irreversibly binds to B6. Good for you taking B12, but when you take the carbidopa is wipes out the B6. The first two enzymes in the pathway that metabolize homocysteine are B6 enzymes (which are wiped out by carbidopa's irreversible binding). This is the primary cause of elevated homocysteine, which has nothing to do with B12. If you have not heard 5MTHF reductase is a dead argument. Recently two Betaine enzymes have been found which are 10 times more powerful than the 5MTHF reductase enzyme, so much for 5-methylterahydrofolate.
The way out of the problem of carbidopa binding to vitamin B6 is to separate taking them by at least two hours in time. That way they do not meet up in the digestive tract and each can do what it needs to do without interference from the other.
Thank you for the perceptive comment. I was also perplexed that Hinz did not mention carbidopa's effect of reducing the amount of L-Dopa needed. Dismissed it, not as deliberate deception or incompetence, but as an author's prerogative to emphasize what is most pertinent to his argument. Besides, the two benefits of carbidopa are almost the same thing since nausea is a byproduct of taking the large doses of L-Dopa needed when there is no carbidopa (or other DDC inhibitor) included. Am not sure whether taking B6 is the right way to compensate for the B6-binding effect of carbidopa--for all I know, they may mutually bind and render each other inoperative! But as a medical ignoramus, what do I know? (By the way, for reference , it might be worthwhile to point out that Dr. Hinz says that one mg of carbidopa binds with one mg of B6. So if, e.g., you are taking three 25/100 Sinemets per day, you'll need at least 75 mg of B6 to compensate.)
To address your point about B6 binding carbidopa - maybe that is why my offs are worse, but I figure take the B6 once a day separated from carbidopa so the peak serum levels do not coincide. and hope!
When carbidopa is taken with L-dopa, the amount of L-dopa required is about 1/5 to 1/6 compared to taking no L-dopa. There are many things in managing the Parkinson patients that are counter intuitive (the opposite of common sense). One is that people tend to think you can give B6 to while taking carbidopa. Try and get your head around the following. If you take enough B6 to irreversibly bind to all the carbidopa being taken you are left with "naked L-dopa. You are back into the nausea and all the problems associated with giving only L-dopa. Next, you will need to take 5 to 6 times more L-dopa to compensate for no carbidopa in the picture. Since the only prescription form of L-dopa available has carbidopa in it as you take 5 to 6 times more L-dopa which has 5 to 6 times more carbidopa and you need to take 5 to 6 times more B6 to compensate. If you think you can compensate for carbidopa binding to B6 irreversible while taking carbidopa, don't do it. You need to stop the carbidopa completely, make up for the B6 deficit it has caused, then continue to give the amount of B6 that the body needs to function in homeostasis. ParkinsonsClinics.com
Dear Doctor, Thank you for the interesting comment. I am indebted to the brilliant H. protocol--for more than 2 years, it has allowed me to alleviate my symptoms while staying away completely from the devilish drugs and from Carbidopa. Many, many thanks!! (The passing of Dr. Alvin Stein, your collaborator and my original provider, was very sad.) Because of my concern about a possible B6 ovedose, I reduced my intake only from 300 to 200 mg, with the permission of my current provider, Dr. Oler. The protocol still seems to work very nicely.
I just watched the 2 interviews between Dr. H. and Dr. Stewart at the ParkinsonsClinic.com: parkinsonsclinics.com/index...
I was so impressed that I forwarded the link to my 2 MDS and urged them to acquaint themselves with the H. protocol for their own sake and that of their patients.
There are still many patients who continue to take carbidopa via Sinemet and related drugs, even though they are very concerned from hearing that it binds up B6 in their bodies. For this set, our Park_Bear explains a simple workaround, namely separating the B6 and Carbidopa in time, and then both remain effective: healthunlocked.com/parkinso...
That workaround should reduce the ill effects of Carbidopa. Though of course, I understand that Sinemet will never address the underlying nutrient deficiencies of PD that you and your team highlighted.
New to the site. My mom has struggled with PD for about 15 years and is pretty progressed. Her neurologist said on a 0-5 progression scale she is a 3. After 12 years on sinemet, she went off from it completely in July 2016 and started on the Hinz protocol managed by a naturopath in Texas. No real drastic improvement in symptoms, but happy to see her off from carbidopa r/t the above mentioned B6 depletion. I feel I am noticing increasing confusion/disorientation and just so recently hallucinations. The confusion is not new, but increased since going on this protocol and the hallucinations are DEFINITELY a new symptom. She is on 28 grams daily in 3 divided doses. The nausea was poorly controlled in the beginning, but well controlled now.
She has been getting IV chelation (DMPS and EDTA) since April, 2015 related to toxic levels of mercury, cadmium, arsenic, lead, tin and aluminum, I think this has shown very mild improvement in mobility.
She had a positive stool sample for H. pylori, treated with mastic gum, grapefruit seed extract, pyloricin HCL.
The real struggle with her symptoms are: bloating, anxiety/depression, insomnia, constipation, urinary incontinence. And we have seen little relief, if any with these after regimens such as probiotics, natural antimicrobials, many, many supplements (currently)--omega, melatonin, magnesium, curapro(curacumin), lithiume, DHEA, P5P, B6 complex, CoQ10 (ubiquinol), glutathione, natokinase, zinc, and many more over the years.
Alas, she tested positive for Lyme this week. Looking into: rife machines, cat's claw, IV vit. C, IV ozone.
Would appreciate general insight, especially related to effective Lyme treatments and hallucinations and confusion related to Hinz protocol. She was one 5 - 25/100 C/L, 3 times daily (total 15 per day) at time of discontinuation. Is 28G overdosing her dopamine? Her chelation Dr. told us of a man that was dosing himself with macuna and went schizophrenic....
It's been year or two since I read the relevant Hinz paper and I have forgotten a lot of the details. So please excuse me if I am a bit vague. But a skilled provider can and should do a "pill stop" with your mom, whereby the meds are stopped for a day or so. This is associated with urinary assays which look at the amounts of dopamine and serotonin excreted in the urine. Based on very extensive patient records, there is an ideal range of these excreted metabolites specified by Hinz et al. Also, if stopping the meds leads to an improvement/deterioration in symptoms , this, together with the urine assay, will point toward a calibrated change in the dosage of Mucuna. With a few pill stops, a knowledgeable provider should be able to zero in on an ideal dosage. The whole adjustment process may take several weeks or more. (I have never done a pill stop myself, but i have had about 2-3 urinary assays.)
Well good for you, you obviously do not have Parkinson's or any other disease relating to inadequate levels of centrally acting monoamines. I am missing the point why you shared this.
I do not want to throw a curve ball, but my opinion has changed. Shortly after I posted this, I talked with my nauropath, Dr. Chad Oler, who, in my opinion, evinces a deep understanding of the Hinz protocol. He explained that the vitamin B6 is necessary in megadoses for the proper functioning of the protocol. His patients take up to 600 mg per day (per dose??) with no ill effects. I defer to his expertise. Ever since, I have continued to take 200 mg per day, marginally less than the 300 mg that was prescribed initially by Dr. Alvin Stein. So far, so good: no neuropathy. If it should rear its ugly head, I will have to reconsider. What kind of dose were you taking?
I took three 250-mg capsules. Yikes! Too much by any measure. I think I'll lay off for a bit then start in again at a lower dose. I watched a talk that had been streamed at the PD World Congress by a neuro from, I think, U of Florida. He said several non-pharmaceutical supplements that were believed to curb PD symptoms didn't pan out when studied but that B6 did work.
Dumpelkin, you need to quit spreading misinformation. The National Institute of Health on its website indicates that B6 toxicity may start when you take 1,000 mg (1 gram) for a year or more, and here you are trying to scare people with your puny little dosing claims while trying to make them believe you know it all. Please Dumpelkin post the peer-reviewed scientific papers you have written on B6 toxicity so we may have a formal change to refute your claims.
Dear Doctor, I have no credentials, and do not pretend to be an expert on medical matters. My goal as a member of this forum is "sharing, not scaring." Part of the problem is that you and I are quoting from different authorities. My figure of 100 mg/day for the Tolerable Upper Intake Limit (UL) of B6 was taken from p. 170 of the book "Fight Parkinson's and Huntington's with Vitamins and Antioxidants" (2016) by Kedar N. Prasad, Ph.D., a respected nutrition researcher. It applies to adults 50y and up. "The values are adapted ... from the table of Dietary Reference Intakes (DRI) published by nap.edu." Well, nap (National Academy Press) is a reputable publisher. The question now is "which authority should we trust?"
My father follows the Hinz protocol. My question is whether or B6 - he takes it in the form of mucuna pruriens- should be taken separately from the l-dopa, maybe two hours apart. Please feel free to answer if you like.
The B6 testing is notoriously unreliable. The best way to gauge outcomes is follow the patient. It is the age old saying of medicine, "Treat the patient not the lab."
Let’s see. The documentation you ask for is provided. You don’t respond directly to the documentation. Instead you now claim testing is unreliable (do you have documentation?). Methinks I smell a troll. 🤧
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