posted
I have been looking into MTHFR (for which I am one of both variants) and this made me look into b vitamins, which made me stumble onto Pyroluria.
Has anyone had this and were they helped by taking b6 and zinc?
I am a little scared to take zinc as I have read Zinc can aggravate Lyme.
I have a family history of fairly extreme anxiety and struggle with is a bit myself. I am wondering if this isn't keeping my lyme/babesia treatment at such a stalemate.
Posts: 477 | From Pennsylvania | Registered: Nov 2015
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posted
All I can say is to get your B6 level checked before supplementing any.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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ukcarry
Frequent Contributor (1K+ posts)
Member # 18147
posted
I did test borderline positive for this a few years back and have been treating it for at least 18 months with zinc, p-5-p, Evening primrose. I can't say that I find that it helps with anxiety, though some of the nerve pain problems in my feet seem to have improved whilst I have been treating this.
One difficult thing is knowing when you have found the right doses for you and I have been reluctant to experiment too much with the P-5-p.
I don't think that it is something to try without having your pyrrhole levels tested.
Posts: 1647 | From UK | Registered: Nov 2008
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So this is the article I have read. If this stuff is true, than why is no one out there treating for it? This article makes it sound like it could be quite a game changer... I feel depressed about checking into it because I can't find anyone who had success with it.
Posts: 477 | From Pennsylvania | Registered: Nov 2015
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posted
I took Depyrrol all through Lyme treatment. I had to buy it from Amsterdam. Now Dr. K has a product called Core for the same thing. Both are balanced forms of supplementing for pyroluria.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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ukcarry
Frequent Contributor (1K+ posts)
Member # 18147
posted
Well, I am treating for it, as I said, and I think lots of others here did too around the time of that article, but it is not mentioned as much nowadays, so perhaps people did not experience the improvements they had hoped for or perhaps they are no longer posting on Lymenet.
It has not really been accepted by most mainstream doctors, in my experience.
Why don't you arrange to be tested, Foxy Loxy and go from there?
By the way, that link gives 250 mg as the amount of zinc to treat with and I am pretty sure that that is an error. It is a very high amount of zinc to take. When I first treated this, I used Dr K's Core product and that had nothing like that amount of zinc. I suspect that it should have read 25mg.
Each individual with this has different amounts of p-5-p/B6 and zinc needs depending on the levels of pyrroles and on their experience of supplementing, which is why I prefer not to use Core or other similar formulations. Buying the supplements separately makes adjusting doses easier.
Posts: 1647 | From UK | Registered: Nov 2008
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I just find it a bit strange that Dr K acts like it is so prevalent in lyme and so key for so many patiens...yet nobody talks much about it or acts like it helped much.
If mainstream Drs don't believe in it, I doubt my Dr. will either. I also read that the test are highly subjective and another Dr. says just start taking B6 and zinc and see if it helps.
I know I did not get this genetically, but I EASILY could have gotten it with all the stress I have been through with this illness. All my head symptoms have been scary and I feel stressed.
ukcarry
Frequent Contributor (1K+ posts)
Member # 18147
posted
There are so many possible causes for the stress and anxiety that can come with Lyme and co-infections, including babesia and parasites, which can be a huge underlying issue that is not always obvious.
Over time, having this illness can also put a big strain on your adrenal glands, which doesn't help.
B6 that is not processed can build up and cause toxicity in some people, which is why it is prudent to be tested or to work with a practitioner who understands and is experienced at treating pyroluria rather than just taking B6 and zinc yourself.
Posts: 1647 | From UK | Registered: Nov 2008
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Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
We 've been trying to solve the HPU problem for the last 10 years.
Improvements exist, but are hard to see short term.
We could not take any form of zinc, as it made us ill.
Last 2 months, we found VFT zinc, and we are taking it.
Now we remarked our nails clearly changing shape, strength, and we keep detoxing.
We'll be continuing with that zinc and slowly add the other HPU supplements separately to see what happens.
Posts: 6199 | From Brussels | Registered: Oct 2007
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posted
Keep us posted Brussels! Have you tested positive for the condition? Or are you self treating just in case?
Posts: 477 | From Pennsylvania | Registered: Nov 2015
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Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
We were tested positive in the past though urine. Later we only used ART energy testing.
My daughter was the exact description by the book, with all signs of the kph typical child.
She's just been to the dr and the dr said: go on with the energy minerals!
Posts: 6199 | From Brussels | Registered: Oct 2007
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ukcarry
Frequent Contributor (1K+ posts)
Member # 18147
posted
Yes, regular zinc supplementation, even for those without Lyme, should be approached cautiously for a number of reasons.
Of course, if you were to test positive for pyroluria/KPU/HPU, that is a different matter, as you would need to replace what is being dumped.
Posts: 1647 | From UK | Registered: Nov 2008
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Brussels
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posted
KPU would rather be treated, I agree.
Posts: 6199 | From Brussels | Registered: Oct 2007
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