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How to acquire Kuvan (sapropterin, tetrahydrobiopterin, BH4) for raising neurotransmitters & treating nitrosative stress

Learner1

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@Learner1 I haven't read this entire thread. So forgive me, i dont have the brain power to spare with a pending telemed appt @9:30am. Impreparing for.
but.... this "caught my eye"
QUOTE: Arginine uses up BH4 to make NO. Citrulline recycles back to arginine. So, without enough BH4, could be problematic?END QUOTE
Here's my issues....my arginine is below normal limits does that mean my bh4 is stable? Or do I not have arginine to have bh4. Sorry if I'm confusing things. I'm onerwhelmed.
( I have terrible feet, ankle leg swelling....no heart issues)
BTW. I've been supp. Citrulline 3-5g a day and slowly its raising arginine.
First of all, I'm not a doctor, so anything I say is just a guess. My arginine runs a little low, and I've supplemented both citrulline and ornithine further on in the urea cycle in the past, to bring my levels up, which had the good side effect of helping me sleep better.

There are a number of reasons why arginine could be low. First is that you're using more than you're eating - many patients have low amino acid levels, so eating adequate protein is a first step, along with digesting what you're eating, so digestive enzymes might be helpful if this is not happening.

In my case, I believe my arginine is low because I've been frantically using it trying to make nitric oxide. BH4 is needed to make nitric oxide from arginine, which then converts to citrulline. I have shied away from supplementing arginine because I have a history of multiple herpes viruses, and arginine tends to promote their activity.

So, because I have other reasons for needing BH4, I'm taking it, and also working on increasing my nitric oxide which is chronically low. I've used humann brand nitric oxide test strips, which show whether I'm high medium or low. And after finding I was low in nitric oxide, I've been using a supplement from Berkeley life to successfully raise my nitric oxide levels.

Citrulline can recycle back to arginine, so that's a way of getting more arginine. But having more arginine isn't the big goal, it's what the things that arginine can do and convert into that are most useful, and most people find that it's nitric oxide that's deficient. NO deficiency is related to several diseases.

I hope this isn't too overwhelming an answer, but try reading and rereading it and looking up a diagram of the urea cycle and BH4, and look at the Berkeley life website which discusses nitric oxide deficiency And hopefully you will get the answers you're looking for. If not, let me know what your questions are and I'll try to do a better job at the answering.

Good luck!
 

kangaSue

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Did you mean to quote your own post?
I did, yes.
So, I'm not exactly convinced of the criticism of it
That wasn't meant as a criticism, more just to point out that if there was a choice, sepiapterin sounds like it would be the better thing to take.
Sepiapterin is not on the market to buy, so it's not superior if one can't take it.
Yeah, fair comment. It is available as a pharmaceutical chemical for research purposes though.
The Berkeley Life product has been helpful in raising my NO. Have you tried it?
Haven't tried it, no. I tolerate very little in the way of any supplements (or vitamins, minerals, herbs etc) and was floored when the NO donor worked without causing any side effects other than an initial headache.
I don't! I haven't had any luck with GI docs, much better luck with functional medicine doctors... But, you see one, don't you?
I had one GI who was worth his weight in gold and believed an NO donor could have good benefit but he retired a year ago. I don't see a functional medicine doctor either, just do my own thing in trying to find solutions.
Arginine uses up BH4 to make NO. Citrulline recycles back to arginine. So, without enough BH4, could be problematic?
That makes sense to me, but I'm not the sharpest tool in the shed for figuring these things out.
 

junkcrap50

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Is kuvan only available on prescription?

This is the situation in the UK trying to get Kuvan, the company want £70,000 ($88,386.55) per patient per year In the USA annually at the above prices its about $700! https://www.bbc.co.uk/news/health-48218737
Yes. Pretty much. But you can buy it in a homeopathic dosage from Ecological Formulas or from a nootropic bulk powder website, as mentioned further up in this tread. But in October 2020, the patent for Kuvan will expire, at least in the US. So it will be cheaper, but probably still very expensive.

My city is still under complete lockdown. I had made some enquiries on Indiamart with some dealers but lockdown struck. So I am waiting for relaxation of lockdown. Will update when I have more info.
@raghav , I was wondering if you had any chance to follow up your inquiries for BH4 in India? How is the pandemic and lockdowns fairing over there?