Pyroluria -- UPDATE

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Pyroluria -- UPDATE

Postby zoe-down-under » Aug 14, 2011 9:28 pm

My original post on Pyroluria is below, but I wanted to update you all here as it might be of interest to others. Maybe not now, but if my new doctor is correct, then some women who read this might want to check out Pyroluria for themselves in the future.

My update is: I finally got around to seeing my new doctor and he is soooo lovely, he's like the biggest breath of fresh air. He told me he thinks all of my childhood illnesses and all of my adulthood issues (asthma, anxiety, fatigue etc.) are being caused by the Pyroluria.

When I mentioned that I get H.G when I'm pregnant, he nodded as if he would expect that, and jotted it down. I then tentatively asked him if he thought H.G and the Pyroluria were connected and he said "Yes, they absolutely are." He said it in this tone of absolutism. Then he got on with other things.

Then right at the end of the consultation I aske the more direct question: "So, do you mean, you think if Pyroluria was treated properly the HG wouldn't come back?" And he answered: "Yes. Absolutely." What The Fruitcake!?! Did I just hear that right?

I was in shock. I still am. Obviously I have huge reservations about this theory, although everything I read tells me it makes perfect sense.

I've only just started the nutritional treatment and it's taking some getting used to -- threw my dinner up last night from all the zinc.(nice). But slowly we'll get there and maybe if I see enough improvements in the rest of my life I might start to give more thought to the idea the H.G might actually be a non-issue if we try again?

Anyway, I'm in a state of shock, excitement and kinda gross nausea (from the treatment) but I'm keeping a diary and I thought of starting a blog to journal my journey. That way anyone who wants to keep up to date, can.

One things for sure, if it turns out that I get super well again, and I try and successfully have a healthy pg, you all will be the FIRST to know about it!

Hopes and prayers that we all find our way....

Zoe







Hi all, not really sure where to post this so I'll start here.

I have recently been diagnosed with a genetic blood disorder called Pyroluria. Also known as Mauve Factor, I think.

Anyway, this disorder occurs when you have too many of these pyrroles in your blood. Any amount of pyrroles in your blood will be pee'd out. Our bodies don't want them. But, vitamin B6 and iron bind to these pyrroles -- SO if you have high levels of pyrroles in your blood you are continually peeing out your B6 and iron stores.

This means that people who have Pyroluria are always depleted in B6 and iron. And then some others because you need B6 and iron to store other nutrients. But I'm not up to date on all the other stuff, yet. I'm so newly diagnosed.

But it got me thinking about how many HG women respond well to B6. And how for me, the banana bag drip was the only thing that made a difference when I was pg -- loaded with VITAMINS!

Maybe there's a link here? Haven't talked to the dr yet about it. I always feel a fool when I ask if a dr thinks this or that might help with a pg. Like they're thinking "omg, would this woman give up already!" Sigh.

Here's the symptom list for pyroluria:

Pyrolurics often have weak immune systems and may suffer from frequent ear infections as a
child, as well as colds, fevers and chills.
 Neurological symptoms include fatigue, nervous exhaustion, insomnia, poor memory,
hyperactivity, seizures, mood swings and inability to think clearly.
 Lack of regular periods in girls and impotence in males.
 The pyroluric often has unusual smelling breath and body odour (it has been likened to pear
drops).
 Inability to tolerate drugs and alcohol.
 May wake with nausea.
 Cold hands and feet.
 Frequent abdominal pain.
 Disperceptions.
 Constipation.
 Difficulty remembering dreams.
 Frequent upper abdominal pain.
 Stretch marks in the skin.

I fall into the anxious category. Was really sick as a child. Can't eat before 10am due to nausea. Among other things.

The testing process is fairly simple. It's a urine test but has to be done at particular labs. It was expensive for me here in Australia -- $120. But sooo worth it if it can help me function like a normal person.

My result was pretty high. I can't wait to get to the dr's and start the nutrients.

Would be amazing if there was a link between this and HG? I know it's wishful thinking, but I had to let you all know just in case!

Hugs,

Zoe
Last edited by zoe-down-under on Sep 09, 2011 10:31 pm, edited 1 time in total.
Zoe from Australia
DD '98 - Moderate HG
Foster DD joined us in 2004 - No HG! ;)
Angel loved and lost Jan 07 - Severe HG
zoe-down-under
Been There Done That
 
Posts: 214
Joined: Mar 19, 2007 9:27 pm
Location: Australia

Postby DebbieS » Aug 16, 2011 7:46 am

It sounds logical that if you have a problem that causes low B6 that you could have problems with HG. Are your iron levels OK? It's a bit of a concern that pyroluria doesn't seem to be recognised by mainstream medicine (so you might get a strange reaction talking about it with a Dr!). Hope it works out for you.
Deb
3xHG
DS 2003; Loss 2005.
DD 2007.
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Postby zoe-down-under » Aug 16, 2011 5:17 pm

Hi Debbie!

Yes, I wish more doctors would know about it. Although I know of two docs in our greater area that do test for it. I think the news is spreading. There are enough studies to prove that it is a real condition. They have been studying it for quite a long time. I'm sure if anyone wanted to get tested they could print off a few studies for their doc? If a doc isn't open to helping someone improve their life, then what kind of doc are they? :wink:

Don't know about my actual B6 levels yet as no doc has ever actually tested for that. My iron stores, B12 and zinc have all been low for forever.

My mother and I were talking about this the other day. How many times they rushed my to hospital as a child to get bathed in ice due to fevers that wouldn't come down. All the birthday parties I had, with me on the lounge unable to get up and play. It would have been great to learn of this earlier, yes. All the worry my mum and dad had to go through. Would have been great if all that could have been different. :roll:

Oh well. I'm sure we learned things from it. :)

Hope to get the word out!
Zoe from Australia
DD '98 - Moderate HG
Foster DD joined us in 2004 - No HG! ;)
Angel loved and lost Jan 07 - Severe HG
zoe-down-under
Been There Done That
 
Posts: 214
Joined: Mar 19, 2007 9:27 pm
Location: Australia

Postby zoe-down-under » Sep 09, 2011 10:36 pm

Just bumping to get the update above seen.
zoe-down-under
Been There Done That
 
Posts: 214
Joined: Mar 19, 2007 9:27 pm
Location: Australia

pyroluria

Postby AshliMal » Oct 20, 2011 2:56 pm

Hi girls,
I took the "do you have pyroluria?" test and I had a ton of matches, I actually teared up because I felt like finally something that that matches me.
So,
I went to my doctor and he was very understanding but basically said this isn't a real thing. So I went to my naturopath and she said she'd never heard of it, but was more than willing to read all the literature I brought. She says she thinks I should take the treatment for it (extra B6 and zinc, with a little copper to make sure I don't get depleted).
She said she thinks about 250 - 500 mg of B6 and no more than 75mg of Zinc.
I was wondering what your taking Zoe?
Thanks
~ Ashli
2 HG pregnancys
10 wks 0 d
7 wks 3 d
AshliMal
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Posts: 26
Joined: Jul 06, 2009 3:13 pm
Location: Vancouver, bc

Postby zoe-down-under » Oct 20, 2011 4:33 pm

Hello!

I'm so glad you're pursuing this path if you match the symptoms. I too felt like it was the missing piece of the puzzle for me. Has explained a lot in my life.

I'm meeting a lot of woman who have pyroluria who also had HG when pg so there is definitely a possible link there as well.

I'm so sorry that your doc doesn't know enough about this condition yet. It IS real but a lot of doctors don't know about it. If he did his research he would learn how real it is.

May I ask where you live?

I'm in Australia and I know that most doctors here probably wouldn't believe in it, but many more are learning about it from other doctors.

There are also lots of naturopaths who know of it. But don't be disheartened if your doc and naturopath didn't know of it before, my excellent naturopath didn't know about it either.

My doctor treats a lot of people with pyroluria now and he is just great. I'm starting to respond well to treatment too. I've just had my first period in years that I didn't have to lie on the lounge all day. It was still painful but not "out of it" painful, iykwim?

Okay, so as for your treatment, I'm no expert but here's what I take:
3 per day --> Hi-Strength Evening Primrose Oil
3 per day --> Health Research Institute Pfeiffer Primer
1 per day --> Biotin (the one I use is called Thorne Research)

Although b6 and zinc are the main culprits, a lot of other things can be out of balance because of losing so much zinc and b6. The evening primrose helps to calm the mind stuff. The biotin is another form of b vitamins. Most of us need magnesium (which is in the primer) to help calm the mind as well, stop thoughts racing, muscle pain if you have any and help sleep.

I definitely think you should NOT take any copper until you've had bloods done to show that you need it. A lot of people with pyroluria have high copper levels which makes them feel just awful. You wouldn't want those levels to go any higher.

If you can find a doc who believes in it then you could get your b6 and zinc levels checked as well as do the test for pyroles in your urine -- that proves that you have it.

It's pretty complex. Could you call around and see if any naturopaths actually treat pyroluria, or know about it?

Are you on Facebook? Another suggestion I have is for you to join the pyroluria facebook group. There are some absolutely amazing doctors and naturopaths on there that know absolutely everything and if you ask a question they actually answer you. It can be a bit intense with all that they discuss but you want to start at the simple things. You want to get your b6 and zinc in first. Just that will help you.

The facebook page is: https://www.facebook.com/groups/114586101398/

The main doc I listen to on the group is a woman called Kerry Harris and there is a fantastic naturopath called Helen. They both had pyroluria themselves and now treat others and know heaps about it. They're in Australia. But if you asked for docs in your area you might find someone knows one.

Hope all this helps. You're not alone. And you're not imagining it. Keep pushing for information and help.

Kindly,
Zoe
Zoe from Australia
DD '98 - Moderate HG
Foster DD joined us in 2004 - No HG! ;)
Angel loved and lost Jan 07 - Severe HG
zoe-down-under
Been There Done That
 
Posts: 214
Joined: Mar 19, 2007 9:27 pm
Location: Australia

Postby zoe-down-under » Oct 20, 2011 4:41 pm

Oh, forgot to mention, the primer tablet I take has everything else in it like the two types of b6 we need, the zinc, the magnesium and some other stuff. So I am taking the zinc and b6.

Take care, Ashli.

Zoe

P.S if you join the facebook group I'm Zoe Griffiths on there.
Zoe from Australia
DD '98 - Moderate HG
Foster DD joined us in 2004 - No HG! ;)
Angel loved and lost Jan 07 - Severe HG
zoe-down-under
Been There Done That
 
Posts: 214
Joined: Mar 19, 2007 9:27 pm
Location: Australia

Thanks Zoe

Postby AshliMal » Oct 24, 2011 5:48 pm

I "requested to join" the facebook group.
I am having the hardest time finding a doctor to even test for pyroluria. I did speak to my naturopath who said that my symptoms do match the symptoms of pyroluria, and that she'd never heard of it before (I appriciated her honesty).
Anyways,
She said that I could add more B6 and Zinc. She was concerned my copper levels might drop because of the zinc, but apparently my multi has a bit of copper in it.
So she said I should take 500 mg of B6 and 60mg of zinc and see how I feel, today is the first day and so far I'm in a vitamin coma haha but the zinc didn't make me throw up so that's a bonus (i was fully expecting an HG flash back :)
I am wondering if my ammounts are similar to your ammounts?? 500 mg B6 and 60mg Zinc??
And thank you for the facebook link. I saw your wall post on HG, I have a lot of hope that my next pregnancy is going to go better then the other 2 :)
~ Ashli
2 HG pregnancys
10 wks 0 d
7 wks 3 d
AshliMal
New Member
 
Posts: 26
Joined: Jul 06, 2009 3:13 pm
Location: Vancouver, bc

Postby zoe-down-under » Oct 24, 2011 6:01 pm

Hi Ashli,

I'm taking about 450mg of zinc per day. It's hard to know my exact b6 amount as it is being given through a couple of different types of b vits, but your amount of b6 doesn't sound alarming or anything.

Once you are accepted on the pyroluria FB page, you can ask all those questions and get professional advice from Kerry and Helen.

It has taken me eight weeks to start to really pick up now. But my pyrrole levels were really high. Once I took up a third dose of nutrients a day, I have started noticing a difference. I've also started practising Qi Gong though, which is helping a lot with some of my side-order illnesses that pyroluria has left me with.

Look forward to seeing you on the FB page. Let me know if you have any trouble getting on. I think I can add you to the group if I know you on FB as well.

Zoe :D
Zoe from Australia
DD '98 - Moderate HG
Foster DD joined us in 2004 - No HG! ;)
Angel loved and lost Jan 07 - Severe HG
zoe-down-under
Been There Done That
 
Posts: 214
Joined: Mar 19, 2007 9:27 pm
Location: Australia


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