LymeNet Home LymeNet Home Page LymeNet Flash Discussion LymeNet Support Group Database LymeNet Literature Library LymeNet Legal Resources LymeNet Medical & Scientific Abstract Database LymeNet Newsletter Home Page LymeNet Recommended Books LymeNet Tick Pictures Search The LymeNet Site LymeNet Links LymeNet Frequently Asked Questions About The Lyme Disease Network LymeNet Menu

LymeNet on Facebook

LymeNet on Twitter




The Lyme Disease Network receives a commission from Amazon.com for each purchase originating from this site.

When purchasing from Amazon.com, please
click here first.

Thank you.

LymeNet Flash Discussion
Dedicated to the Bachmann Family

LymeNet needs your help:
LymeNet 2020 fund drive


The Lyme Disease Network is a non-profit organization funded by individual donations.

LymeNet Flash Post New Topic  New Poll  Post A Reply
my profile | directory login | register | search | faq | forum home

  next oldest topic   next newest topic
» LymeNet Flash » Questions and Discussion » Medical Questions » Pyroluria anyone?

 - UBBFriend: Email this page to someone!    
Author Topic: Pyroluria anyone?
foxy loxy
LymeNet Contributor
Member # 47053

Icon 1 posted      Profile for foxy loxy     Send New Private Message       Edit/Delete Post   Reply With Quote 
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  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
All I can say is to get your B6 level checked before supplementing any.

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 95350 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
ukcarry
Frequent Contributor (1K+ posts)
Member # 18147

Icon 1 posted      Profile for ukcarry     Send New Private Message       Edit/Delete Post   Reply With Quote 
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  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
Yes .. be careful even with p5p...

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 95350 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
foxy loxy
LymeNet Contributor
Member # 47053

Icon 1 posted      Profile for foxy loxy     Send New Private Message       Edit/Delete Post   Reply With Quote 
https://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=3&cad=rja&uact=8&ved=0ahUKEwiVpOic8v3VAhUB8IMKHa3QCykQFgg2MAI&url=http%3A%2F%2Fwww.betterhealthguy.com%2Fimages%2Fstor ies%2FPDF%2Fkpu_klinghardt_explore_18-6.pdf&usg=AFQjCNHFZMW4I1rvnuqbx8aWWtDGKEGAyw

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  |  IP: Logged | Report this post to a Moderator
sixgoofykids
Moderator
Member # 11141

Icon 1 posted      Profile for sixgoofykids   Author's Homepage     Send New Private Message       Edit/Delete Post   Reply With Quote 
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  |  IP: Logged | Report this post to a Moderator
ukcarry
Frequent Contributor (1K+ posts)
Member # 18147

Icon 1 posted      Profile for ukcarry     Send New Private Message       Edit/Delete Post   Reply With Quote 
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  |  IP: Logged | Report this post to a Moderator
foxy loxy
LymeNet Contributor
Member # 47053

Icon 1 posted      Profile for foxy loxy     Send New Private Message       Edit/Delete Post   Reply With Quote 
Thanks ukcarry! [Smile]

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.


** edited to removed Lyme practitioner's name **

[ 08-31-2017, 04:34 PM: Message edited by: sixgoofykids ]

Posts: 477 | From Pennsylvania | Registered: Nov 2015  |  IP: Logged | Report this post to a Moderator
ukcarry
Frequent Contributor (1K+ posts)
Member # 18147

Icon 1 posted      Profile for ukcarry     Send New Private Message       Edit/Delete Post   Reply With Quote 
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  |  IP: Logged | Report this post to a Moderator
Brussels
Frequent Contributor (5K+ posts)
Member # 13480

Icon 1 posted      Profile for Brussels     Send New Private Message       Edit/Delete Post   Reply With Quote 
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: 6196 | From Brussels | Registered: Oct 2007  |  IP: Logged | Report this post to a Moderator
foxy loxy
LymeNet Contributor
Member # 47053

Icon 1 posted      Profile for foxy loxy     Send New Private Message       Edit/Delete Post   Reply With Quote 
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  |  IP: Logged | Report this post to a Moderator
Brussels
Frequent Contributor (5K+ posts)
Member # 13480

Icon 1 posted      Profile for Brussels     Send New Private Message       Edit/Delete Post   Reply With Quote 
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: 6196 | From Brussels | Registered: Oct 2007  |  IP: Logged | Report this post to a Moderator
foxy loxy
LymeNet Contributor
Member # 47053

Icon 1 posted      Profile for foxy loxy     Send New Private Message       Edit/Delete Post   Reply With Quote 
I am scared of zinc.


https://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=5&cad=rja&uact=8&ved=0ahUKEwio2s_93IvWAhWIxYMKHbnUAfsQFghHMAQ&url=http%3A%2F%2Flymediseaseguide.net%2Flyme-diseas-zinc &usg=AFQjCNHg7YN-NJmQvXGQYZZhgP7RpLhp2g

Posts: 477 | From Pennsylvania | Registered: Nov 2015  |  IP: Logged | Report this post to a Moderator
ukcarry
Frequent Contributor (1K+ posts)
Member # 18147

Icon 1 posted      Profile for ukcarry     Send New Private Message       Edit/Delete Post   Reply With Quote 
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  |  IP: Logged | Report this post to a Moderator
Brussels
Frequent Contributor (5K+ posts)
Member # 13480

Icon 1 posted      Profile for Brussels     Send New Private Message       Edit/Delete Post   Reply With Quote 
KPU would rather be treated, I agree.
Posts: 6196 | From Brussels | Registered: Oct 2007  |  IP: Logged | Report this post to a Moderator
   

Quick Reply
Message:

HTML is not enabled.
UBB Code is enabled.

Instant Graemlins
   


Post New Topic  New Poll  Post A Reply Close Topic   Feature Topic   Move Topic   Delete Topic next oldest topic   next newest topic
 - Printer-friendly view of this topic
Hop To:


Contact Us | LymeNet home page | Privacy Statement

Powered by UBB.classic™ 6.7.3


The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:

The Lyme Disease Network of New Jersey
907 Pebble Creek Court, Pennington, NJ 08534 USA


| Flash Discussion | Support Groups | On-Line Library
Legal Resources | Medical Abstracts | Newsletter | Books
Pictures | Site Search | Links | Help/Questions
About LymeNet | Contact Us

© 1993-2020 The Lyme Disease Network of New Jersey, Inc.
All Rights Reserved.
Use of the LymeNet Site is subject to Terms and Conditions.