Vitamin B6 is an essential cofactor for over 100 enzymatic reactions. We need abundant B6 to keep what is left of our dopaminergic neurons as healthy as possible, especially since they are already compromised by Parkinson's. Levodopa medication depletes vitamin B6. B6 is only present in foods in low milligram amounts, so supplementation is usually necessary if we are taking levodopa medication. Failure to do so is likely to result in B6 deficiency, which may increase Parkinson's progression. It can ultimately result in no B6 at all, with dire consequences:
Epilepsy due to no B6 left:Refractory Seizures Secondary to Vitamin B6 Deficiency in Parkinson Disease: The Role of Carbidopa-Levodopa karger.com/Article/FullText...
"A 78-year-old gentleman with a 6-year history of Parkinson disease (PD) on carbidopa-levodopa, ... presented with new-onset myoclonus and focal to bilateral tonic-clonic seizures."
"The bilateral tonic-clonic part usually begins with stiffening of the muscles (called the tonic phase).
• Air being forced past the vocal cords causes a cry or groan. The sound probably does not reflect pain or distress, because the person is not aware at this point.
• The person loses consciousness and falls to the floor.
• The tongue or cheek may be bitten, so bloody saliva may come from the mouth.
• Breathing can be temporarily impaired, and the person may look blue in the face.
Jerking movements happen next (called the clonic phase).
• The arms, legs, and face begin to jerk quickly and repeatedly; bending and relaxing at the elbows, hips, and knees can be seen.
• After a few minutes, the jerking slows and stops.
A person may lose control of their bladder or bowel as the body relaxes"
Back to the prior reference:
"Five months prior, he began experiencing a more rapid progression of his PD symptoms and an overall decline in functional status notable for worsening off periods, depression, and anorexia. His response to treatment with carbidopa-levodopa grew less robust despite increasing dosages.[Presumably due to a worsening B6 deficiency] ...the vitamin B6 level came back as undetectable at <1 μg/dL. ...intravenous B6 was initiated. Following introduction of these interventions, the patient had no further epileptic events."
"Abnormal B6 levels have been reported in 60 of 145 PwPD (41.4% relative frequency). Low B6 levels were reported in 52 PwPD and high B6 levels were reported in 8 PwPD. There were 14 PwPD, polyneuropathy and low B6. There were 4 PwPD, polyneuropathy and high B6. There were 4 PwPD, epilepsy and low B6. Vitamin B6 level was low in 44.6% of PwPD receiving levodopa-carbidopa intestinal gel and in 30.1% of PwPD receiving oral levodopa-carbidopa." [emphasis added]
Once again for emphasis: There were 4 [People with] PD, epilepsy and low B6.
"A pins-and-needles sensation, numbness, burning pain, and loss of vibration sense and position sense (knowing where the arms and legs are) are prominent symptoms. Because position sense is lost, walking and even standing become unsteady. Consequently, muscles may not be used. Eventually, they may weaken and waste away. Then, muscles may become stiff and permanently shortened (called contractures)...
Polyneuropathy often affects the nerves of the autonomic nervous system, which controls involuntary functions in the body (such as blood pressure, heart rate, digestion, salivation, and urination). Typical symptoms are constipation, sexual dysfunction, and fluctuating blood pressure—most notably a sudden fall in blood pressure when a person stands up (orthostatic hypotension). The skin may become pale and dry, and sweating may be reduced. Much less often, control of bowel movements or urination is lost, leading to fecal or urinary incontinence."
Neuropathy can also be caused by B12 deficiency. Testing for B12 levels does not reliably detect deficiency so I recommend everybody supplement B12.
B6 supplementation has acquired a bad reputation in the medical community:
B6 supplementation has acquired a bad reputation in the medical community because the cheap, inactive, common form of B6, pyridoxine, is toxic. It occupies binding sites that require the active form of B6 - P5P. In so doing it creates a situation similar to B6 deficiency. As a result pyridoxine can cause neuropathy. The active form of B6, P5P, is not toxic and is readily available. A distinction between these two is rarely made in medicine even though this distinction is vital. Conventional lab blood tests only check the active P5P version of B6. The levels of potentially toxic pyridoxine are not known and not reported.
Note that this statement from the above reference: "There were 14 PwPD, polyneuropathy and low B6. There were 4 PwPD, polyneuropathy and high B6. " fails to distinguish what form of B6 supplementation resulted in the high B6.
To avoid B6 toxicity due to B2 deficiency, supplement vitamin B2 in addition to B6. Vitamin B2 is non-toxic and Parkinson's patients are commonly deficient in B2. A small trial using 90 mg per day showed benefit for Parkinson's patients. I personally have started taking 100 mg daily. I recommend supplementation, especially if you are supplementing B6.
When To Take P5P
As stated, levodopa medication depletes vitamin B6. The reason for this is that if carbidopa encounters B6, the two will bind together irreversibly, inactivating both. The same goes for benserazide in the case of madopar. So if taken together orally, levodopa medication and B6 will inactivate each other. If possible, P5P should be taken 2 hours apart from levodopa medication. If that is not possible, separate P5P from levodopa with a meal.
How Much P5P To Take
Many people, myself included, can tolerate dosages similar to their intake of carbidopa - I personally take a daily dose of 70 mg of P5P, versus a daily intake of carbidopa of about 60 mg. This ensures I will always have an abundant supply of vitamin B6 in my body. I have been doing this for years without any ill effects.
Some cannot tolerate even low milligram daily amounts.This is almost certainly due to B2 deficiency but this has not been definitively proven. For that reason I cannot make a specific recommendation as to how much others should take.
If you have a cooperative medical team that is willing to do regular testing of B6 and B2 levels that may be helpful. It appears that the upper plasma level of B6 is easily exceeded for people who are supplementing. For those who have low tolerance of vitamin B6 this may be a good way to stay out of trouble. It is also possible it may cause undue alarm for those who have high tolerance, and their doctors.
All I can say in conclusion is supplement B2, and use your own judgment on dosage of B6. Be familiar with the signs of neuropathy so you can act quickly in case it arises.
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park_bear
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Recent posts about Vitamin B6 mentioned pyridoxine is toxic. Hubby had a neurologist appointment a few weeks ago and I brought up this subject. She said forget Vit B6 and just take Vit B12.
Yes pyridoxine is toxic. P5P is the form of B6 to use. All I can say with regard to the neurologist's comment is to consider the medical references cited here and decide for yourself.
Thanks. Properly discard the bottles of B6 we had which contained the toxic stuff.
Will consider P5P.
Just a note - this neurologist closed her ears when we brought up the B1 Therapy and asked her thoughts. That is why HU and contributors are oh so very useful, citing valid medical references, providing explanations and much more.
B6 depletion is especially a problem when the dose of levodopa is ≥1000 mg/day.
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There is very heavy spending by pharma to propagandize doctors to believe that supplements can do no good and prescription meds can do no harm. Unfortunately too many buy into it. Details on that subject here: healthunlocked.com/cure-par...
My neuro here in South Dakota (albeit a young person - which may be good actually), is all ears in regards to what I am doing "outside of the C/L box" when it comes to Parkinsons. She is a huge proponent of supplements, etc., plus very encouraging and always provides feedback regarding what she has heard is working, or maybe not.
She's one that also seems to understand that we in the PD Community are always seeking better ways to treat ourselves despite "certain" neurologists and big pharma. I have encouraged her to read the posts here on HEALTH UNLOCKED, but will twist her arm further to see if she is watching this forum on a regular basis. A wise neuro should be curious to see how and what the community is doing apart from the medical communities typical protocol. I will also quiz her at my next appointment, specifically about vitamin B6 in the form of P-5-P and it's usefulness to us.
Thank you! Sometimes the spacing gets hard bc HWP takes gabapentin which can not be taken with magnesium. Wish more multi Bs would utilize p5p vs Pyrdioxine.
Well now I'm getting scared ..I take Sinemet 100/25 3x day, Magnesium L Theronate daily with Gabapentin and D3, 100mg B6 , B complex, Lexapro 20mg, Lions Mane, and 50mg of Sublingual B1 3x week ...supposedly u need Magnesium for B1 to work Thoughts?
My MD said the impact of magnesium on gabapentin is "theoretical". I just try to space it by at least an hour or two. I did not know about B1 and magnesium. I do put Magneisum L Theronate in his am tea when he usually takes 1 sublingual 100mg B1. It does get very confusing and overwhelming. I joined a website for pharmacists to check interaction with meds, supplements and herbals. Just realized I was not careful enough with the timing an amino acid powder he was taking. He is anemic after a surgery and needed iron, had to space that very carefully tried to get it from protein loading at night (eatting bulk of protein needs later in day). One supplement I really felt helped his cognition was Gingko, but it is a blood thinner so you have to be careful if you take other blood thinners etc. choline is another supplement recommended for PD.
My husband tried Gralise the time-released gabapentin $$ it was awful, could not remember things. He can't use much higher than 900-1200 mg without cognitive effects, he takes it for nerve pain (lumbar spine issues).
Sage advice as always Park Bear. I heeded your earlier warning / suggestion and added P-5-P to my supplement regimen. Although I do need to revisit how I am taking it and when. The separation factor from Carbidopa appears crucial. Thanks for your continued efforts.
What got me started with this issue way back was noticing that my morning dose of levodopa was not working because I was taking it with a B complex that had B6. If you are not experiencing any decreased effectiveness of your levodopa medication your timing is probably okay.
good grief....nothing is easy. thanks for the supplement link, appreciate it.
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"High folate levels and cancer have a complex relationship. Some studies suggest that folic acid may prevent cancer in its early stages, especially colorectal cancer. However, too much folic acid may also promote cancer growth or recurrence by affecting gene expression or interfering with cancer treatment."
Park_bear and I have similar views on the importance of testing given the often low B6 levels in PwP. However, we differ considerably on the dosage of B6 supplementation in case of deficiency. I don't want to rehash that discussion here. However, it is remarkable that there is no known study where guidelines are given on the degree of B6 supplementation while a good B6 balance is crucial in PD treatment.
Through HU, I have gathered a database of B6 test results from PD patients. Some from PWP without supplementation, and some with.
Preliminary results show indeed that measurements without B6 supplementation usually indicate a (often severe) vitamin deficiency. But the measurements with B6 supplementation, even at very small amounts of > 4mg, indicate an (usually severe) overdose. This regardless it's form, P5P or pyridoxine, and even the Carbidopa intake. Out of the about 20 test results to date almost none fell within the desired minimum and maximum reference range.It may be because the problem cases in particular are reporting.
If you or others on HU have B6 test results, so even if they show normal values, please share them with me, either publicly or through chat. Please include the following information:
- Test result with stated minimum and maximum reference range
- Whether or not B6 supplementation was taken and duration (also important are the dates when changes in dosages have occurred given the long half-life of a month of B6)
- Amount of B6 supplementation in mg (including through B-complex, multivitamin and other combi supplements with magnesium, melatonin, energy drinks and supplements for supporting the nervous system, improving mood, etc.)
- Form of B6 (pyridoxine or P5P)
- PD patient or not
- Daily dosage of C/L in mg or separate Carbidopa dosage for example at mucuna, if applicable
- Date of the test result
- If you experience adverse effects such as peripheral neuropathy or symptoms resembling it.
The more data we have, the better we can identify correlations and potentially provide clear advice on B6 dosage. With this, if there is sufficient response, I hope to interest medical scientists to set up a responsible thorough research. The first contacts for this have already been made.
It is possible that some people have low, or no tolerance for B6 supplementation. There are other cases where different segments of the population are known to have conflicting requirements or differing tolerance of a nutritional substance.
Foreign governments are quicker to investigate emerging health issues, just as they have with glyphosate. Australian government is required labeling for above 10mg and German government recommends a maximum of 3.5mg of B6. The second link includes a wealth of information and research links.
Howdy Park, I watch this channel on YouTube, It's called The Nerve Doctors. They appear to specialise in treating and repairing/reversal of Neuropathy. Personally I do not have it.. but I'm watchful though.
I’ve taken Levodopa for almost two years and became B6 toxic- ten times above the limit- from an ordinary B12 supplement, with added b6 and b1. I’m still recovering from neuropathy.
Hi CaritaP, I incorporated your shocking test results from September 1 into the database. Do you have any older or even new test results? I hope you are now more balanced and you notice that with reduced PD and PN symptoms. 🍀
Many thanks, Park Bear. It's very helpful to know P5P and any Vit B complex should be taken 2 hours apart from levadopa. May I ask if you take mucuna pruriens as an alternative source of levadopa? I only take C/L for the sake of the carbidopa.
I have tried mucuna. The extract which is mostly concentrated levodopa does not work for me because it causes nausea. The unmodified whole mucuna bean powder does work for me, but I have chosen to take C/L because it's more convenient.
Sadly, I would imagine other deficiencies are caused by other prescription meds, but this one is of great importance to us PWPs. And urgent. And it makes a lot of sense.
I am a parkinson's patient. with horrible tremors. But I don't understand the following in the post, possible to help me to understand it better to implement. I take a AYURVEDIC NATURAL dopa suppliment by NAME KPIAKACHHU it is INDIAN MUCANA, it has no CARBIDOPA. HOW to go about in the following situation .??
How To Take P5P.
As stated, levodopa medication depletes vitamin B6. The reason for this is that if carbidopa encounters B6, the two will bind together irreversibly, inactivating each. The same goes for benserazide in the case of madopar. So if taken together orally, levodopa medication and B6 will inactivate each other. If possible, P5P should be taken 2 hours apart from levodopa medication. If that is not possible, separate P5P from levodopa with a meal.
How Much B6 To Take
I cannot recommend a specific dosage because it has become apparent that proper dosing of P5P is not a one-size-fits-all affair. Many people, myself included, can tolerate dosages similar to their intake of carbidopa - I personally take a daily dose of 70 mg of P5P, versus a daily intake of carbidopa of about 60 mg. This ensures I will always have an abundant supply of vitamin B6 in my body. I have been doing this for years without any ill effects.
It is diifficult to follow the Post and implement. I would , post my B6, B2 Levels , will it possibble for you to advise me . Thanks in Advance.
Thank you very much. I will post the B6 & B2 , levels on Saturday or Sunday. Your comment about that you are not worried about B6 Levels as I am not taking carbidopa,please can you eloborate on this >
Thank you very much for your response. I take one B12 VITAMIN 1500 MGG everyday after dinner. I have given the link here : amazon.in/dp/B0BQYYXLDC?ref.... Do I have to stop taking this 48 hrs before I give my blood for testing the levels of B12, B6 & B2 . Please advise.
Do you mean that B12 supplements need not be stopped 48 hours before taking the Blood Sample to check the levels of B12, B6 & B2 ??. Do you advise me only to Check only B6 Level ??
It is important to avoid taking any supplements or medications containing B12, B2, or B6 for at least 24 hours before the test to ensure that the results reflect the natural levels of these vitamins in your body. However, stopping your supplementation for 48 hours can give a distorted view of your actual situation.
For the B12 test, it is necessary to fast for 8 to 12 hours before the test to ensure the most accurate results. The food and beverages you consume can affect the B12 levels in your blood, and fasting helps to eliminate this temporary increase in B12 levels that occurs after eating.
On the other hand, for the B2 and B6 tests, it is generally not necessary to fast.
Thank you very much for your response and advise . My blood will be drawn on Monday Morning i.e. tomorrow, that will become over 48 hrs B12, and about 12 hrs of fasting, as I take my dinner at 7.30 PM.
I am not taking any B2, or B6. But the test center has two types of B12 Tests, one is Just B12 and another is B12 active (HOLOPRANSCOVALAMIN) , which one I should take?
Test your vitamin B12 serum value. At a B12 value between 150 and 300 pmol/l, a follow-up test of the Active B12 test is advised. As a result, a deficiency can be demonstrated in previous ones than with the regular B12 test. It sometimes happens that at a total B12- value of 300 pmol/l the Active-B12 has already fallen below 20 pmol/l.
You can also skip this first step and go straight to the next step and test your Active Vitamin B12 HoloTC. This test indicates in time that a Vtiamine B12 deficiency has developed and that you need to supplement vitamin B12. Research has shown that the Active-B12 value decreases faster than the total B12 value (serum-B12). This means that the Active-B12- value may be too low, when the total B12- value is still normal. A Vitamin B12 deficiency can be demonstrated earlier in this way.
Holtranscobalamine (HoloTC) is an indicator of biologically active Vitamin B12 and is independent of serum measured (total) vitamin B12 concentration in the blood.
Result higher than 60 pmol/l: vitamin B12 deficiency unlikely
Result between 40-60 pmol/l: dubious
The determination of methylmalonic acid as a metabolic marker for intracellular vitamin B12 deficiency is then recommended.
Result below 40 pmol/l: biologically active vitamin B12 deficiency has been established, no further testing is required.
Here some research about the B12 active (HOLOPRANSCOVALAMIN) test.
“More than 20 y ago, insights into the physiology of vitamin B-12 led to the suggestion that holoTC might be a sensitive marker of early vitamin B-12 deficiency. Since then, holoTC measurement has come of age. Today, we can conclude that holoTC seems more suitable than total vitamin B-12 for diagnosis of vitamin B-12 deficiency. However, to date, holoTC has not acquired wide clinical acceptance, most likely because of the test's cost and limited availability. On the basis of the data we present in this review, we predict that holoTC will also be an excellent marker for monitoring a population's vitamin B-12 status. Currently, a strong need exists for studies that can prove or disprove this prediction”
Thank you very much. Yes you are right, ACTIVE B12 is costly, almost 6 times more than justB12.. I will go for ACTIVE B12 as per your advise once for all to get the correct deficiency, so that proper corrections can be done. I will check with the Blood testing center, when they can do the acticve test and post tbe result , soon after I receive the same
Thank you very much about posting the link Knowing your B6 Test result. I want to be very open with you , I did not understand. I would appreciate , if you can tell me in simple terms, what the link information trying to convey ??. Today my blood has been taken for B6 and B12, I will get the results tomorrow, I will post it tomorrow.
Regarding your blood test results for B6 and B12, the information in the link is not directly related to your specific test results. It is a request for individuals like you (mostly HU) to share their B6 test results to gather data and potentially provide clearer advice on B6 dosage in PD treatment.
By gathering more data, I hope to identify correlations and potentially provide clearer advice on B6 dosage. Also to interest medical scientists in conducting further research on this topic.
So excellent you want to share your B6 test results! I am interested in the following information: the test result with reference range, whether B6 supplementation was taken and for how long, amount of B6 supplementation in mg, form of B6 (pyridoxine or P5P), PD patient or not, daily dosage of C/L or Carbidopa if applicable, date of the test result, and any adverse effects experienced.
I can find some information in your previous posts, but it helps me if you put everything together.
Also the test results from other members are very welcome, even if they are normal values. It is partly those that are important to see how a B6 balance can be achieved.
The Blood Test Center Guy who had come yesterday to my home to draw my blood for testing the Blood told me that the results would be sent by tomorrow that is I should get the results by today any time before evening. Now it is 12.45 pm here, and medicine which had taken in the morning KAPIKACHUU at about 9.15 AM before B/F ,in an empty stomach worked upto 12. 45 today , generally it works up to 12.30 PM to 12.45 PM, depending on many factors, viz, quality kapi ka chuu . lite B/F. efore The Blood Test Center Guy who had come yesterday to my home to draw my blood for testing the Blood told me that the results would be sent by tomorrow that is I should get the results by today any time before evening. Now it is 12.45 pm here, and medicine which had taken in the morning KAPIKACHUU at about 9.15 AM before B/F ,in an empty stomach worked upto 12. 45 today , generally it works up to 12.30 PM to 12.45 PM, depending on many factors, viz, quality kapi ka chuu . lite B/F. efore B/F obut I will be able to post my test results if I receive them before 1.00 PM todABY NOW ,IS 1.14 pm> i as I will have my LUNCH from 1.10 PM to 1.45 PM, i i\thereafter I take a nap, till 2.30 . > W.IIL POST TEH RES'ULT S TOMOERROW. ANY GIVE MY E DAT FEISL ATR 1. M, as my medicine works upto only 2.30 P.M. thereafter, I will have terrible breathless tremors from about 2.45 PM to 3.30 PM, ny wife will put on the tremor will continue 3.45 PM sweating B/F obut I will be able to post my test results if I receive them before 1.00 PM today, as I will have my LUNCH from 1.10 PM to 1.45 PM, thereafter I take a nap, till 2.30 PM, as my medicine works upto only 2.30 P.M. thereafter, I will have terrible breathless tremors from about 2.45 PM to 3.30 PM, ny wife will put on the tremor will continue 3.45 PM sweating
Infact I wanted to complete the followingmessage, but I coudl nort as my tremors hs set in. Hope you undesrtand wwhnt i want .o coenvey, mu ytupinfg is dif ficmutl. i wanted mto uupl.oad my vpedo abpuo tmy condiyitof so taht , knowelegabel peopel in nytdhi froeym can gi ve soluneio ,plesae tellme ho wto upload mmyvoeds??. please tell me step y step metod to upload th e v ideos. I W.ill ot it ntommo/rroe mrnign. With my rtemor ahs set it in , I can not typ e. Horep ypu unedsratnd myconbditon ,s orrrry fro typign.
Hi Ramuu, I understand that you are having difficulty typing due to your tremors and you would like to upload videos to share information about your condition. I apologize for any stress inconvenience caused by my previous responses.If not English speaker, it’s difficult for me to read your text, but in this case AI works wonders. Tell me if his translation is not good:
"In fact, I wanted to complete the following message, but I could not as my tremors have set in. I hope you understand what I want to convey. My typing is difficult. I wanted to upload my video about my condition so that knowledgeable people in this forum can give solutions. Please tell me how to upload my videos. I will do it tomorrow morning. With my tremor, I can not type. I hope you understand my condition. Sorry for typing."
You would like to know how to upload videos. Not my specialty, but again AI will explain to you step by step how to do this:
1. Find the website or platform where you want to upload the video. This could be YouTube, Vimeo, or any other video platform.
2. If you don't have an account yet, create an account on the platform. This is usually done by registering your email address and choosing a password.
3. Once you are logged in, look for the "Upload" or "Upload Video" button. This is usually located in the top navigation bar or on the platform's homepage.
4. Click on the "Upload" button and select the video you want to upload from your computer. You can usually upload multiple video formats, such as MP4, AVI, MOV, etc.
5. While the video is being uploaded, you can usually enter the title, description, and tags for the video. This will help people find and understand what the video is about.
6. Once the video is uploaded and all the information is entered, click on the "Publish" or "Save" button. This may vary depending on the platform you are using.
7. After publishing, the video will be processed and it may take some time before it is available to view. This can vary depending on the size of the video and the speed of your internet connection.
I hope these steps help you with uploading your videos. Otherwise, there may be other members who can help you better. With those B6 test results, take it easy, in France it usually takes 2 weeks...
Thank you very much for your response. Your / AI Translation about what I wanted to convey is absolutely correct . At the outset , I would like to tell you , that you don't have to feel sorry for my tremor.. IT is my condition and I accept it, Regading video uploading the AI is not giving the solution, as I don't see any such provision in the HealthUnlocked, web page. I have to pose this question to Administrator.
I have got a reply from the TEST CENTER that they would send the test report by FRIDAY, that is tomorrow. I will post the results on Friday if I receive it before 1.00 PM, or I will post it on Saturday.
Your B6 level seems to be on the low side, but still within the reference range. A modest supplementation of 1 to 3 mg B6, preferably P5P, appears to be sufficient, possibly through a low-dose B-complex including B2, to ensure a good balance between all B vitamins.. What was your B12 result? I assume from your previous posts that you have been diagnosed with RLS and are undergoing an Ayurvedic treatment with Kapikachuu and not taking Carbidopa in your medication?
I need to take low dose of B- Complex, how much mg. In addition to 1 to 3mg of Supplement P5P . I have posted my B 12 result. Again I am posting it : B12 ACTIVE : 50.7 pmol/L normal range : 25-165.
Just like your B6, your B12 levels are on the lower side but still within the reference range. It would be advisable to consider supplementation for both. To ensure optimal interaction between your B vitamins, it's recommended to also have sufficient B2 and B9/11 (folate) present. For this, I would suggest taking a low-dose B-complex with active forms, preferably not exceeding 100% to 200% of the daily requirement, particularly for B6 (1.5 mg - 3 mg P5P) and folate (0.2 - 0.4 mg 5-MTHF), as overdosing can cause serious undesirable side effects. This way, you can achieve a better balance and avoid the need to take separate B vitamins.
Thank you very much for your advise. But I am confused about the supplements to take. You are advising me to take P5P of 1.5mg - 3mg to take care of B6. And also Low dose B- Complex,for compensating B6 & B12,. And yo have also stated " To ensure optimal interaction between your B vitamins, it's recommended to also have sufficient B2 and B9/11 (folate) present. For this, I would suggest taking a low-dose B-complex with active forms, preferably not exceeding 100% to 200% of the daily requirement, particularly for B6 (1.5 mg - 3 mg P5P) and folate (0.2 - 0.4 mg 5-MTHF), as overdosing can cause serious undesirable side effects. This way, you can achieve a better balance and avoid the need to take separate B vitamins"
Can you please suggest me which supplement to take and how much ??
Based on your B6 and B12 levels, they are slightly on the lower side but still within the normal range. It would be beneficial for you to consider supplementing with a low-dose B-complex. This is because B vitamins work together synergistically, and having adequate levels of B2 and B9/11 (folate) is important for optimal interaction between the vitamins.
To address this, I would recommend taking a low-dose B-complex that contains active forms of the vitamins. It is important to choose a supplement that does not exceed 100% to 200% of the daily requirement, especially for B6 (1.5 mg - 3 mg as P5P) and folate (0.2 - 0.4 mg as 5-MTHF). Overdosing on these vitamins can lead to serious undesirable side effects, so it's best to stay within the recommended range.
By opting for a low-dose B-complex, you can achieve a better balance of B vitamins in your body and avoid the need to take separate B vitamin supplements. This approach ensures that you are providing your body with the necessary nutrients while minimizing the risk of side effects.
By now I understand your question better, because it seems that it is very difficult to find bioactive B-complex vitamins in India, let alone in low doses. In Europe it is also difficult, but can still be found with some searching. Same in the US, there it is Thorne who offers the active form, but still in too high a dosage. You can then choose to take 1 pill once or twice a week.
I will send you the info, maybe you will manage to find something similar or better in India. Maybe tips from other members?
At the outset, I would like to wish you and your family a Merry Christmas and a Very Happy New Year. Rather my wishes are belated, as the Christmas celebration started on Sunday mid-night. It is Monday here, it is now 12.25PM
I AM ALREADY TAKING B12 SUPPLMIMENT of the saem company, atb ached the amazon linke , t hmis has taekn care o f my B12 and B6 requirements. That is whyB6 and B12 are within the range . amazon.in/Health-Veda-Organ...
I am currently taking 1 capsule after dinner, though the company has recommended to take 2 capsules. Do you agree?? . You are also of the same opinion. I should take 2 capsules ?? .You are also advising me not to take B2 ??.
1 serving per day seems more than enough. You are low in your B6 and B12 levels, but you do not have a deficiency! You need B2, but it is provided in your B-complex.
It might be good to retest after 2 to 3 months. I would like to hear your results again at that time.
As mentioned, your chosen B- complex really provides you with enough B vitamins with 1 capsule daily, including B2. If necessary, you can take 1 extra B12, but not necessary. Good luck!
I want to know, how to fix my Breathless tremor problem and RLS, which is devastating for me after 2.3 PM till 7.00 AM the next day morning. when the KAPIKACHU _INDIAN MUCANA weakens. Please refer to my deatailed POSTING
It's crucial to seek medical advice from a healthcare professional. Some one who can assess your symptoms, review your medical history, and provide personalized recommendations. I myself have no experience with the situation you described, but maybe other members can help you.
It is also somewhat outside the theme of this post, but we may also be able to chat!
Accroding to a Neurologist I consulted , he told me that I am suffering with drug resistance , tremor dominant Parkinson's disorder. My case needs to be evaluated further,as but they will be treating on experiment basis, to check on why SYNDOPA with Carbidopa won't work on me ( INDIAN equivalent of Sinemet with C/L ) .According to DR. I can try HIGH FREQUENCY ULTRASOUND for treating my tremrors . I consulted a Dr, a Neurologist he claims that he can treat my temors effectively, by HIGH-FREQUENCY ultrasound. But there are following limitations .
1. They can treat only one side, I have both side tremors. This limitation is due to the approved protocol, not due to machine capabilities. I have to suffer other side tremors for the next 6 months, which they will take up for. treating after 6 months.
2. High-frequency ultrasound treatment for one side cost about Rs 250,00,000 /-' i.e . about USD 30,000, which, i, don't have , two sides means about USD 60,000, which is beyond me.
3. Side effects of the procedure, it may or may not work at all, it may induce deafness or speech loss or both or even death, if thero UF should be precise., it is all matter of mm precision.
4,. If everything goes well, only then the tremor will be nearly eliminated, but continue to suffer from DEYKNESIA, freezing, slowness, and deterioration conditions with time.
5. I AM ALREADY 65 years, How long, I will survive? hence o AHVE DECDOEDED TO GO F RO THIS TREATMENT/.
6. i AM G E TTIMNG TEJH RTEMOR, I AC NOY T NYPE ANNYMORE.
4. to travel to Coimbatore , for full evaluation and confirmation whether the treatment will work for me. Traveling will be challenging for me, as it takes about 5 hrs to reach, the flying time is only 60 mins , rst of the time gOES IN T RANSIRT'
Sorry for not replying earlier... Yes, it is a good idea to take B vitamins, including B12 supplements, during breakfast as it can enhance their absorption. Breakfast is a suitable meal because it is usually the first meal of the day and your stomach is empty.
Furthermore, during a meal, it is recommended not to take your levodopa medication, which is better for the antagonistic relationship between B6 and carbidopa.
Yes, I am taking Indian MUCANA ( KAPIKACHHU - in powder form, I take 1.5 tea spoon i.e about 10.5 grams in hot water 250- 300 ml , that will put me in ON condition within 15 Min) , which has natural dopa. As it has no CARBIDOPA, another advantage there is no way my B2 or B6 Levels will get dipleted , am I right?? . Only draw back is that it works when my stomach is empty and weakens fast with heavy food intake so I have to be care full while taking B/F, it has to be lite. IF you can tell me how to improve my ON time with MUCUNA, that will be great !!. AND also , if you or anyone in the HUL can tell me , why ,I get breathless tremors and Jaws chatter after , MUCANA weakesn, that happens after lunch . is it beause lunch is heavy ?? But I have tried with Ony COCONUT WATER ,in place of regular LUNCH, still the MUCANA did not work longer, I got the temor asusal , SO my inference, that MUCNANA Works longer with lite food intake is also defeated !! and Suggest me how to control or eleminate the tremors.
I get Indian Mucuna powder from, amazon, (KAPIKACU) Vaidyaratnam Brand, they grow, manufature and give treatement. I am not aware of Kshirpak method of preparing Mucuna.
IN fact i have been cosnuming INDIAN Mucana powder , it is quiet effective, it will put me to ON Condition within 15 Mins. I take my first dose at 6.30 AM, it works by 6.45 AM in the mornign, i am ON, I go to bath by 7.00AM, this will work till 9.30 a m, I will take 2nd Dose by 9.15 AM, it will work by 9.45 AM I take Lite B/F at 9,45, this will work upto 12.45 PM. IF i take the heavy B/F, it will stop workign early say at about 11.45 to 12.15 PM, then I will get tremors , I have to wait till 12.45 PM to take another dose of MP .As it will work only, if it is taken in empty stomach. So , this will not work , if there is undigested food in the stomach. So I can not take this after LUNCH, for about 5- 6 hrs . Down side of this, is after LUNCH, the MP works about 1.30 Hrs, as LUNCH will be heavy , even otherwise , I have seen it will not work more than 2 hrs. I have tested this , by takign ony COCONUT water and few dry fruits. Today I have taken at MP 12.45 PM, it is some what medicine is working. no'w it is 1.14PM , now I will take the LUNC H. I will be in ON condition till 2.30 PM, thereafter medicine will weaken , I will start getting tremors and by 2.45PM i will have breathless tremors with Sweatign up to 3.15 PM , . with mouth and JAWS cahttering with loud noise , I use the mouth GUARD or BOXER guard to protect the TEETH from getting damaged and aslo avoid damage to the tongue by biting. to cotnrol the brearhless condtion , I will be put on to the CHAIR, to imrpove my breathing. AFter 15 to 20 mins , my breathing will improve, i will be put on the bed thereafter the strong tremor continues up to 4.00 PM. with mouth and JAWS cahttering, I use the mouth GUARD or BOXER guard to protect the TEETH from getting damaged and aslo avoid damage to the tongue by biting. The tremor intensity comes down by around 4.15 PM,the mouth chattering also comes down, I will be abel to bring the chattering under control, bypushing the upper apart of the jaw by rolling my tongue, then I will remove the guard. But stopping of Chattering of JAWS are temporary. As I put any stress physically or mentally , for example , when I go to urinate the tremors will pick up and chattering will start again , ,it will take time to control. While I am doing excise ,there will be tremor , but Chattering is controlled, but when I tend to loose balance , both chattering and tremor will pickup , till I control my balance. BY 4.00PM daily , I sit in achair with tremors / RMS of the body parts, ankle joints, I AM STARTE D GETTIN G TREM>ORSPM t.o 9.0O PM with tremrors, BY 9.00 PM I Go to bed, as soo n As I get on to bed , tremor , RLS f all body parts starts ,with high intesnity with loud mouth and jaws chatterig, with sweating through outt.Till 7.00 am, I given First doose of KAPIKACHU ( INDAIN MUCANA) get up with great termor and rls .of Bod y parst at 6.30 AM, I will be on by 6.45 PM with slight tremors. By 7.00 AM i will be free of ALL the tremors.
TREMORS is picking up . I will ahevt o go ot my bed roomn tp ly on teh bed.
Please go through , ,if yu ahev any Qs , p/ease ask , but I will b re replyign to yuo tonmmow, I f am alive !!
It’s possible that the chattering is actually dyskinesia and not tremors. I have that at night when I go off my meds. The mucuna works on an empty stomach, but as your day goes on it becomes less effective and you may be experiencing either some peak dyskinesia or some wearing off dyskinesia. Quite often people mistake dyskinesia for tremors, but in my experience the dyskinesia is more violent than tremors. Many doctors do not know the difference between tremors and dyskinesia. You might improve your situation by taking c/l instead of mucuna because more of it gets into your brain which is where it needs to be.
THANK you very much. I had prepared my detailed response to your observation, but due to tremors, I could not send it neither I saved it. please let me know what is c/l ??. Now i try to type out whatever is possible by me, but please execuse my typing, hope you would be able to understand .
The statement that "chattering is actually dyskinesia and not tremors" is a complex one that requires some unpacking and clarification.
AWS or MOUTH chattering is actually dyskinesia and not tremors. ??
You're right, there can be some nuance to distinguishing between jaw chattering (or "JAWs" as you mentioned) and tremors. While both can involve involuntary movements of the jaw, they often have different underlying causes and characteristics.
Tremors:
Tremors are typically rhythmic and involve a back-and-forth or side-to-side shaking motion.
They can be caused by a variety of factors, including Parkinson's disease, essential tremor, anxiety, and certain medications.
Jaw tremors are often described as a feeling of the teeth "knocking" together.
Dyskinesia:
Dyskinesia is a broader term that refers to involuntary movements that can be varied and unpredictable.
It's a common side effect of long-term use of certain medications for Parkinson's disease, such as levodopa.
Jaw dyskinesia can manifest in various ways, such as side-to-side jaw movements, clenching and unclenching of the teeth, or lip smacking.
So, which is it? plese tell me mine is Jaw dyskinesia or tremor.
IN fact i have been cosnuming INDIAN Mucana powder , it is quiet effective, it will put me to ON Condition within 15 Mins. I take my first dose at 6.30 AM, it works by 6.45 AM in the mornign, i am ON, I go to bath by 7.00AM, this will work till 9.30 a m, I will take 2nd Dose by 9.15 AM, it will work by 9.45 AM I take Lite B/F at 9,45, this will work upto 12.45 PM. IF i take the heavy B/F, it will stop workign early say at about 11.45 to 12.15 PM, then I will get tremors , I have to wait till 12.45 PM to take another dose of MP .As it will work only, if it is taken in empty stomach. So , this will not work , if there is undigested food in the stomach. So I can not take this after LUNCH, for about 5- 6 hrs . Down side of this, is after LUNCH, the MP works about 1.30 Hrs, as LUNCH will be heavy , even otherwise , I have seen it will not work more than 2 hrs. I have tested this , by takign ony COCONUT water and few dry fruits. Today I have taken at MP 12.45 PM, it is some what medicine is working. no'w it is 1.14PM , now I will take the LUNC H. I will be in ON condition till 2.30 PM, thereafter medicine will weaken , I will start getting tremors and by 2.45PM i will have breathless tremors with Sweatign up to 3.15 PM , . with mouth and JAWS cahttering with loud noise , I use the mouth GUARD or BOXER guard to protect the TEETH from getting damaged and aslo avoid damage to the tongue by biting. to cotnrol the brearhless condtion , I will be put on to the CHAIR, to imrpove my breathing. AFter 15 to 20 mins , my breathing will improve, i will be put on the bed thereafter the strong tremor continues up to 4.00 PM. with mouth and JAWS cahttering, I use the mouth GUARD or BOXER guard to protect the TEETH from getting damaged and aslo avoid damage to the tongue by biting. The tremor intensity comes down by around 4.15 PM,the mouth chattering also comes down, I will be abel to bring the chattering under control, bypushing the upper apart of the jaw by rolling my tongue, then I will remove the guard. But stopping of Chattering of JAWS are temporary. As I put any stress physically or mentally , for example , when I go to urinate the tremors will pick up and chattering will start again , ,it will take time to control. While I am doing excise ,there will be tremor , but Chattering is controlled, but when I tend to loose balance , both chattering and tremor will pickup , till I control my balance. BY 4.00PM daily , I sit in achair with tremors / RMS of the body parts, ankle joints, I AM STARTE D GETTIN G TREM>ORSPM t.o 9.0O PM with tremrors, BY 9.00 PM I Go to bed, as soo n As I get on to bed , tremor , RLS f all body parts starts ,with high intesnity with loud mouth and jaws chatterig, with sweating through outt.Till 7.00 am, I given First doose of KAPIKACHU ( INDAIN MUCANA) get up with great termor and rls .of Bod y parst at 6.30 AM, I will be on by 6.45 PM with slight tremors. By 7.00 AM i will be free of ALL the tremors.
At the outset, I would like to wish you and your family a Merry Christmas and a Very Happy New Year. Rather my wishes are belated, as the Christmas celebration started on Sunday mid-night. It is Monday here, it is now 11.56 AM.
I don't take SYNDOPA ( Sinemet - Indian equivalent ), because it does not work for me, it rather induces Breathless tremors with excessive sweating.
My B12 result came on FRIDAY, but B6 they told me it would between before current week end . My B12 Active level is normal, that is : mol/L Range : 25-165. I will post B6 ]during next week.But B2 , they have no provision to test , I have to check with .other test center.
My B12 result came yesterday, but B6 they told me it would be next week. My B12 Active level is normal, that is : 50.7pmol/L Range : 25-165. I will post B6 ]during next week.
The blood test center has asked me, whether report of B12 active (HOLOPRANSCOVALAMIN) or just B12 they have two types of tests. I need only B6 testing??
You might want to ask your doctor that. I know for B6 the recommendation is to not take it the day of your blood draw. If it was me, I would not take any of the vitamins you are going to test for within 48 hours of the blood draw.
Thank you very much for your advice. I am not taking any B6 supplements. I am taking only the B12 Supplement that I have stopped as I plan to give blood on Monday for checking levels of B6, B12 and B2 .
Yes. The amount of B6 needed is in proportion to the amount of carbidopa that is consumed. Unfortunately what the proportion should be is unknown at this time.
Thanks, this helps. I have a date with my neurologist on Thursday and I'll ask him. Here is the "retracted" article that probably should have stayed untouched:
I do agree with a good bit of what is in that paper however, Hinz is wrong to say that the mode of action of Carbidopa is to inhibit PLP (B6): pubchem.ncbi.nlm.nih.gov/co...
"Carbidopa ...potently inhibits aromatic amino acid decarboxylase (DDC) and due to its chemical properties"
Inhibition of PLP is a side effect. Hinz's approach was to get rid of carbidopa entirely, which is throwing out the baby with the bathwater. It is sufficient to supplement B6 separately from taking carbidopa.
With all that said it is a pity that Hinz was so thoroughly rejected, as realization of the depletion of B6 due to carbidopa is an important insight.
The main suggestion of the article is that the mortality rate went up significantly since the introduction of c-dopa. Do you agree with this? Also I wonder if green tea extract would be a better choice. I certainly would prefer to take pharmaceutical grade chemicals like sinemet vs Zandopa. But without solid understanding of B vitamins role in this treatment I am afraid sinemet is not much better
As to that part I have no idea whether Hinz is accurate or not. That said, the adverse effects of failing to supplement B6 when taking carbidopa are well documented, as per my post at top.
Between 2009 and 2016, Dove Press published 20 articles that Marty Hinz, M.D., used to promote dietary supplements marketed by a company he founded. Only in 2020 and 2021, Dove and its parent company (Taylor & Francis) retracted all of these articles!!!
The damage of this misinformation was already a fact at the time and all these years many have used his investigations to expose the danger of carbidopa. That there was probably a grain of truth in that claim, but probably not to the extent that Hinz has manipulated for his own gain, has inhibited further research into this B6 <> carbidopa relationship and researchers still seem afraid to burn their fingers here.
Stephen Barrett M.D. recently listed the latest state of affairs in this new report
A Skeptical Look at Dr. Marty Hinz and His Views of “Neurotransmitter-Related Diseases” September 10, 2023
No doubt as a seasoned veteran you are familiar with the Hinz affair. Unfortunately, it is still being referenced, as seen here by Felix. JayPwP made mention of it in a post at the time. That's where I also posted this update.
I hope that by "stay away" it means that you should not take the supplements at the same time as the C/L but rather maintain an interval of about 2 hours. It is definitely not advisable to take such large amounts of B6, even if it is P5P.
My test database shows that even with a dose of 5 mg, you are likely already on the high side. We can discuss this at length, but at the very least, make sure to regularly test your B6 levels and all other B vitamin levels. There is an interplay that needs to be carefully monitored, especially with such high intake of B1. Testing your B6 levels in PD is always a must!
I'm not recommending any particular dose for other individuals. With that said, staying away from B6 is almost certainly wrong. The safest course is as Esperanto recommends - test and supplement accordingly to bring your B6 level into the recommended range. Supplementing B2 is also in order.
"Most people are unaware of a deadly process called glycation that slowly destroys their body’s proteins and lipid cell membranes. Pyridoxamine is a safe and effective anti-glycation nutrient, but the FDA has banned it. Fortunately, pyridoxal-5’-phosphate provides similar benefits and is even better at inhibiting lipid glycation." lifeextension.com/magazine/....
This is of great interest to me. Glycation is the root cause of cardiovascular disease. Cholesterol gets the blame but it is merely the patch material that the body uses to repair damage. Very good to find that B6 helps to prevent glycation. My work on the subject is here:
A Tale Of Two Studies Leads To A Deeper Understanding Of Cardiovascular Disease
Have you read any medical journals about P5P and glycation? I am not saying Life Extension is lying, but I trend to put less trust in people how sale or endorse products.
I have high creatinine (a marker of kidney function) and I am very interested in what Life Extension says.
I did a little bit of delving into it yesterday. The Life Extension references were unusable so I agree with taking them with a grain of salt. That said, it appears it is a real thing. Here is a Google Scholar search on the subject:
The first time I took P5P (after purchasing at the store, about 6 hours before bedtime) I did not sleep a wink (My mind was racing all night). Because of that, I have been afraid to take again that late. I take 2 ea Carbidopa25/Levodopa100 (3) times a day and have been taking 50mg P5P 2 hours after the first 2 doses (no P5P after the 3rd). I am taking 100mg B2 with the first dose of P5P.
With B1 Therapy (my sweet-spot is 1000mg B1 hcl oral) I had been sleeping about 4 hours, then waking every 50 minutes thereafter to use the restroom with no problems going back to sleep (about 10 hours of bedtime).
After P5P, 0 hours first night and 8 hours uninterrupted sleep the next 2 nights, but I cannot go back to sleep.
1) I miss the not being able to go back to sleep, is this normal? 2) Is my fear of taking before bedtime unjustified?
I overreacted to the B6 issue; it is completely possible that my B-complex (4mg B6) may provide enough B6 to supply the B6 that my body needs. For me 50mg caused more problems than it solved. I will talk with my doctor and have my blood tested before taking any additional B6 again. I will (make a point of separating my B-complex) by a meal and my doses of C/L. And, since it's hard to overdose on b's I might try taking one between all C/L does.
Take it easy on the folate, which is included in most B-complexes. My summary of the research - Folate Supplementation Carcinogenic: tinyurl.com/ycdrz5lj
I take B Minus from Seeking Health, which excludes folate (and B12 which I take separately), but it has 20 mg of P5P.
That is one of the reasons why I insist on supplementing with low doses of B vitamins that preferably do not exceed the daily requirement. For folate (also known as B9 or B11), this dosage is 0.2 mg. The studies you mentioned use dosages of 0.5 and 0.8 mg. Similar to high doses of B6, this can pose a risk of serious side effects.
Additionally, it is important to use the active form of folate, L-methylfolate or 5-MTHF, in this case as well. This form has higher availability from the gastrointestinal tract compared to synthetic folic acid. Sufficient vitamin B12 is required for the conversion of folate to its active form. Unlike synthetic folic acid, 5-MTHF does not mask a B12 deficiency. Since a deficiency in vitamin B12 can ultimately lead to a functional folate deficiency, the combination is often recommended. Moreover, 5-MTHF is capable of crossing the blood-brain barrier, unlike synthetic folic acid.
Vitamin B12, the active forms of vitamin B6 (P-5-P) and B2 (riboflavin-5-phosphate), and the methyl donor trimethylglycine support folate metabolism comprehensively. Folate helps reduce the harmful elevated homocysteine level. This underscores the importance of checking your B vitamin levels and potentially supplementing with a B-complex containing bioactive vitamins.
I tried a taking a folate supplement once, I think it made my kidneys hurt. That seems really crazy, I just quit taking it. I will differently look into a Complex that doesn't have folate in it.
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Question about levodopa/carbidopa
Urolithin A (mitopure) and Palmitoylethanolamide and Akkermansia muciniphila
