An example from my own experience. I am currently experiencing a kind of miraculous 'healing' probably (note this word) by reducing and managing a vitamin B6 deficiency. Suppose I hadn't been tested at the time and immediately, like so many, taken a vitamin B complex with P5P, I might as well have put mistakenly the improvement entirely down to hiking,, MIND diet, gardening, fast walking, or Qi Gong. So there may be many other real causative factors of problems that are remedied unnoticed, or worse and more often, go completely unnoticed.
Let's be vigilant about whether or not knowingly misleading PD researchers, gurus and miraculous cures. The latter group is getting more and more attention due to social media. It seems pointless to classify these usually unique cases as healing or aid in halting or reducing the PD. Isn't important either, pretty much all of these methods at least contain valuable symptom controls, so it remains interesting to analyse them. However, it will never be clear what the real cause of the 'cure' is.
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Great news, well done and hope it continues. Hypomethylation and dysfunction of one carbon metabolism may be affecting those like me with B12/folate issues but also those with PD and Alzheimer's (as well as the covid long-haulers) - and it isn't just about the B12 and B9 but also B6 and possibly other Bs, but in the right vitamer for the individual. Fortunately my neurologist checked my B6 as he was convinced that my supplementation would be causing my neuropathy. It wasn't, because I was taking P5P, but it was still a bit low so I increased it.
(Just to clarify, B6 as pyridoxine inhibits the active form P5P, so pyridoxine supplementation can cause symptoms of deficiency).
My first post about a year ago describes the results of the first test that showed that my B6 value was almost nil. I was travelling in Germany and after seeing the result I went straight to a pharmacy and immediately took my first B6 supplementation. Park_bear in particular provided very useful information about the importance of B6 for PD and its interaction with the C/L medication. On his recommendation, I switched to the active B6 form P5P fairly quickly. There was no cooperation from the neurologist at the time and my GP wrote the prescription for the blood test in a laboratory near me. Although care, especially for people with PD, is well organised in France, this was and also the later tests for your own account, 35 €. I mentioned the results of the recent test in that post last week.
I also described the development of the PD and the problems with the peripheral neuropathy PN that occurred almost simultaneously. After a spectacular improvement in the PD (unfortunately not of the PN) within a few weeks after the first test, with the disappearance of almost all typical PD complaints, another dip followed probably due to a B6 overdose. After stopping the B6 supplementation it went uphill again and especially the last month is spectacular despite a new overdose…. Stacking B6 seems to be significant after all.
What I wanted to show in this post is that the so-called PD 'healing' is difficult to understand. Even the claim that B6 is the panacea for me probably needs to be put into perspective. Why is it going so well lately. I constantly forget my medication, still a PD ailment, but mainly because I hardly need it anymore. Yesterday I had a move and I still had to drive 400 km. No more fatal fatigue and my tremor virtually absent. Didn't even take a C/L this morning.
Perhaps it is also the influence of working serious with the aforementioned diet, physical and anti-stress exercises, perhaps the personal and relationship problems that slowly resolve, the greatly improving sleep or the new supplements, (in addition to P5P, B-complex, Melatonin, D3 and magnesium) since 2 months R-ALA, vitamin C and Ginkgo biloba. Is it the cocktail of this whole? Is it temporary or can I hold this a little longer? You just don't know... Maybe it's the beautiful summer! 🍀
And sometimes when something is deficient taking some of it can be beneficial but if you carry on then it overdoses it becomes not beneficial any more and can create new symptoms.
Then once one thing is up to good levels it unmasks the next thing that is deficient which needs to be supplement then onto the next…. Eventually the first thing might be deficient again.
I think that is why it is difficult to figure out what is working.
Each vitamin, mineral, fatty acid, even levodopa I think has a u shaped curve where too little and too much is a problem.
That’s why a good multinutrient can help so there is always some of each necessary nutrient available. Hubby as you know takes Hardys daily essential nutrients with added vitamers , 12 per day, and I’m sure it helps him. My son who is 20 takes them now too and it has fixed his adhd symptoms over a few months.
That was one of the reasons to post this. There are often too many variables and developments that make long-term treatment a success. I expect that AI can help a lot with this in the future. Yet there are also reports from HU members that with a very regular stress-free life they have the PD under control for up to 15 to 20 years with the same C/L dosage! Unfortunately, that will not be possible for everyone. That is why it remains important to analyze your complaints over and over again, unfortunately many do not get the help of their doctors and you will have to DIY and above all be assertive. If I had listened to my neurologist at the time, while with the simultaneous PN even for me as a layman the alarm bells went off, I would have been in a wheelchair now.
Maybe you're a little too impatient. 3 days is very short. 😅 With me it became very noticeable after about 2 weeks. If you do have a blood test done, it may be wise to have your homocysteine level checked in addition to your B6.
yes, i am so weary of trying 'cures' and very impatient. have tried red light, b1, mannitol, ps128, for several months each, all to no avail. my homocystein, mma and b12 were all mid range in june. i am also getting weekly b12 shots
Maybe I'm a coward, but I don't venture into extreme cures. My situation is too good for that now and I don't want to risk that. I believe more in Goethe's maxim 'only in moderation is the master revealed”. But if tests show that there is a shortage or too much somewhere, it must first be repaired and I also try to find out the cause. Moreover, if the situation seems hopeless as with my peripheral neuropathy, then at some point you grab everything to improve your situation. Here too I have already been given up by the PN neurologist, too much damage to the nerve pathways. Irreparable. And I just can't accept that (yet).
Acceptance is tough. I am too much of a realist and a big pharma hater to think there will be a cure for this disease in my lifetime. The things I have tried made sense to me (ps128, red light,mannitol, b1 ). I just want relief from my symptoms and that is why I tried those things. The glove and cue1 have peaked my interest and when feasible, if I am still alive , I will try them
found that the red light therapy improved my hand writing so much that people can now read it,took about 5 months of red light treatment with the helmet to improve . It good that I could compare before and after hand writing. Theres no doubt
I am happy red light worked for u. As it is with Parkinson’s some thipings work for some but not for others. I really wanted red lite helmet to work , but it didn’t help after using it for almost 8 months
Here you touch the actual theme of this post 20fatcats. How do you know that it was not one of the other therapies exercises diets, supplements, medications that (unnoticed) provided the improvement? Or are you the only PwP that has limited itself to 1 agent? 😉
I still haven't managed to find the right dosage. Given the again too high B6 value, I will halve the P5P pills. That means 1 x 12.5 mg per day. That will be different for everyone, so a matter of trying and (for me because of the PN problems every 3 months) testing. Given the stacking that is taking place with me, I am not convinced that the current B6 supplement contains 100% P5P and I am also looking for an alternative myself.
Why not try Hardys with added vitamers for a few months if you can get it where you live? It has the right form of the b vitamins. Maybe there is also something else you are short of.
Thanks for the advice. I try to provide for my supplements as much as possible with the MIND diet. For example, I have just picked more than 1 kilo of berries from a single Aronia bush. If you see what a wealth of nutrients that contains no multivitamin can compete with that. But I do take extra supplements if tests show a deficiency or if I need to combat problems, such as melatonin for my sleep regime.
With a multivitamin, it's hard to tailor it. Hardy's involves 20 mg of B6. It has since emerged that in my particular case, this would give me an overdose, putting me at risk of worsening my PN. Moreover, it contains not only P5P but also the toxic Pyridoxine, making stacking an even bigger problem.
Measuring is knowing, so my next step is to do a comprehensive mineral vitamin test with an orthomolecular doctor.
The tests show that this is probably the case, but to a lesser extent than expected. Without a B6 supplement, a large deficiency develops within 3 months and with B6 also an large overdose in such a period. My intake was still 65/500 C/L in June. Now only 20/200 C/L per day.
Remember that B6 is broken down by the carbidopa, but it interacts! Without carbidopa, the levodopa does not work properly and less dopamine is produced.
Hubby has been taking the full dose of Hardys for 4 years now and has no signs of any side effects. Doctors have never tested for b6 though.
our health department web page says this.
“
Vitamin B6 is present in a large variety of foods, an isolated deficiency of B6 is rare. Deficiency can cause very low ALT/AST levels, EEG changes (and seizures in children) as well as dermatitis, cheilosis and glossitis. Testing may take up to 5 weeks, suggest to treat symptomatic patients. The following drugs can cause deficiency due to increased renal loss - INH, penicillamine, benserazide and carbidopa. Theophylline can also cause deficiency. Toxicity (muscle weakness and sensory neuropathy) has been seen in patients taking > 2 g per day but not in patients taking up to 200 mg/day. RDA is 6 mg/day”
With a normal diet you get about 1.5 mg B6. My own diet is the MIND diet. Normally you don't need a supplement, but that can be desirable, especially with PD and C/L medication. EFSA recommends taking no more than 12 mg per day. It is better to have your blood tested for vitamin B6 first.
Great information thanks. So far I got a lot of info on B1 and B12 but B6 had stayed under the radar. Do I understand correctly that it is better to take it in a P5P (?) form instead of only B6?
My appeal at the time as a kind of B6 guru "get your B6 tested" I made out of the conviction that I was not the only one struggling with a B6 deficiency. In fact, more than half of PDers are. About 30% as a risk group at the diagnosis and the rest at a later stage of PD probably due to problems interacting with carbidopa medication. That basic deficiency was identified already in 1935, and B6 supplementation was the only working medication before the levodopa era in the 40s to 60s! Due to the degradation of carbidopa by B6 in the new drug, this was wrongly stopped. After all, the carbidopa also breaks down the B6 and B6 is essential for the conversion of L-dopa to dopamine in the brain.
I still find it curious that the test call did not get more responses given the large population that should be struggling with this. The huge impact of vitamin B6 deficiency not only for your PD and operation of medication, but also essential for metabolism, especially for the breakdown and buildup of amino acids, regulates the functioning of certain hormones and is necessary for the growth, blood production and proper functioning of the immune and nervous systems. In people who have sufficient vitamin B6 reserves, it can take years for all these functions to be disrupted by the use of carbidopa, in people who are deficient in vitamin B6 (like me) this can start after just a few days. If you are convinced that testing can help a lot of people and prevent a lot of misery, you want to shout it from the rooftops: Get your B6 tested!
I was B6 deficient, then I had too much, which I think was due to taking a pill the day of the test. My third test had me right in the middle. I now take a low B6 (10 mg) b-complex supplement every third day.
Juliegrace merci. I have reread your impressive account of your PD history from a month ago, admiring your energy that you entrusted us with this. That makes me curious at what stage you first discovered your B6 deficiency and/or how you responded to the supplementation. Also when you did a check for the last time? 🍀
I’m not sure about responding but my last test was July 24th, which was normal. My first abnormal test was in November 2022 when my B6 was low, then in May of this year it was high (I mentioned above that I think that was due to taking my B-complex the same day as the blood draw)
Actually, I think the overdose is not due to one day. Stacking takes place due to the long half-life of 1 month for B6. How many mg did you take at the time? It seems that now. with the current intake of about 3 mg per day, you have found your balance? Even though metabolic sensitivity to B6 seems personal, this information is instructive, especially since there is so little to be found about the dosage in vitamin B6 deficiency and how it relates to Carbidopa intake. Merci.
I do believe that taking the supplement on the same day as the blood draw gave me the high reading. The B6 amount in my B-complex supplement is 10mg. I did the repat blood draw 4 days from my last dose [of B6].
Perhaps now is the time and place to mention and remind you of something important that almost everyone who is on HDT therapy mostly after a while forgets. In fact this should also apply to those who've shifted already on LDT therapy. Namely, that Dr. Costantini in almost all of our conversations remembered to mention that HDT therapy should include the use of a B-complex tablet almost every week or two. He always maintained that Vit B deficiency in most cases appears to be more or less complex and thiamine helps even better when supported by B complex to correct the balance and stability and also eliminate rigidity and many other internal symptoms along with L/C which is the only factor reducing/eliminating specifically the tremor. He also described this in his protocols. We just need to read carefully and remember the key details..😉
I have watched this for many years under different names necessary for various reasons and I have clearly observed a pattern of cycles of various things being a cure and then fall from grace as has been discussed many times . Multivitamins with trace minerals is different it seems . The theory is that many reactions in the body require and use very minute amounts of many other substances to complete the reaction , catalysts.
There is much to be said positively supporting this , but it is not a cure. Dont get me wrong, anything that makes just one person feel better is worth discussing but "cure" needs a bit more respect for those that suffer . At this time there is no cure, people are in great discomfort , lives are being shortened and many hours are being spent by care givers, Millions of dollars and thousands of hours are being spent by researchers . There is no smoking gun, no cause identified that can be proven . Let us not make light of that. Those people that do not have advanced Parkinson's but have a stack of Health food store supplements that serve to satisfy their hypochondria do not help in the struggle that they can not possibly understand . There is a reason this disease is not called Parkinsons discomfort
Gymsack I understand your frustration with the "drivel" of PD beginners, but that seems to me to be the logical consequence of the stage you are in. For some, it's to make their honeymoon last as long as possible, then try to tackle all the problems for as long as possible, and others only think about pain management to get through the day as best they can. For everyone, of course, it's delay of execution, just like with "normal" people. This is why I find Laurie Mischley's approach with PRO-PD so realistic. The downward line, which she made very cleverly an upward line with increasing symptoms coupled with a reduction in quality of life. Everyone can see at their stage how you are doing and whether there is any room for improvement. But that PD lifeline also shows that it makes sense to address things as seriously as possible precisely in that initial phase. No "cure", but I have the conviction that slowing down PD is possible. With today's knowledge, with the thousands of studies that support it, I could probably even have delayed PD diagnosis significantly with a different lifestyle. But better late than never, I try to turn the ship around.
I have on this site actively supported exercise , attitude elevation , and personal involvement in your own treatment as you do above . Go ahead and search for a cure ,just dont announce that you have found one without a great deal of consideration.
I try to light a risky phenomenon that I think is underexposed, that my doctors can't help me with and that I like to share experiences about with you so that we can benefit together.
"Beware of taking a huge excess of vitamin B6 in the presence of carbidopa/levodopa, a cautionary tale: I started taking a supplement that had relatively large amounts of complex B vitamins (specifically the one labeled number two below) had 100% (400 mcg) folate, 1667% (100 mcg) vitamin B12 and 5000% (100 mg) of vitamin B6 (based on daily requirement from our diet). Over a period of several days I started feeling stiffer, weaker as if my medicine had stopped treating my Parkinson’s. I especially noticed it one day while playing golf because I had lost significant yardage on my shots, I was breathing heavily, and I was totally out of sync with my golf swing. Just in general, my entire body was not functioning well. Timing wise, I was taking the complex B vitamin pill with my early morning carbidopa/levodopa pill on an empty stomach. Something was suddenly (not subtly) wrong with the way I was feeling, and the only new addition to my treatment strategy was this complex B vitamin pill. There had to be an explanation."
How risky the b6 problem can be is evident from this. If even a respected scientist like Frank Church is surprised that when taking a bizarre multivitamin containing 100 mg B6 (not P5P!) on an empty stomach WITH the C/L medication major problems arise, then there is still a lot of work to be done. Thanks for sharing Patrickk. I knew the article and it contains very valuable information about B6 in particular his research about the stacking effect.
I would supplement. Personally I take 70 mg of P5P which approximates my Carbidopa consumption. However, Esperanto found that level too high so you should also consider his comments.
There are supplements with lower amounts of P5P. Vitakruid is one of the lowest with 5 mg. Swanson, Sunday natural, Lamberts, Woscha contain all about 20 mg. Probably it will be difficult to find these in India. I myself have Vit4ever of 25 mg. I divide the tablets into 4 and take them every other day. Enough for me to compensate for the PD and L/C interaction. You may also be able to do the same with the 40 mg. Halve and take every other day or take a whole tablet every 4 days.
I agree with park_bear. You may still be just within the norm, but very low, especially considering the interaction with C/L. Your B6 is partly eliminated by the carbidopa, but on the other hand you need enough B6 to make the dopamine.
Given my experience of overdosing due to the stack effect of B6 by the long half-life, I would apply the “safe” maximum EU standard of 12.5 mg B6 (P5P) for a period of 2 months. After that, I would recommend doing another test to understand what the effect of supplementation is in your situation. Then you can still decide to take a higher dose as PB suggests, but I would actually expect you need a small break and continue with even a lower dose. A point of attention, don't take the P5P simultaneously, but at least 2 hours after/before your C/L
Perhaps that your medication will also work better and you may even be able to make do with a lower C/L dose in the long run. 🍀
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