Is anyone familiar with pyroluria?

[Only me]

I was doing a lot of research this morning trying to find a solution for my daughter's severe insomnia. We found out that she is gluten intolerant and has been GF for over a month but her insomnia has only gotten worse. By chance I came across a website talking about pyroluria. They had a check list of symptoms and dd had several. I was just curious if anyone had any experience with this.

[Only me]

bumping hoping that someone will be familiar with this.

 

While we are waiting for the neurologist appointment and possibly taking dd to a place like Mayo I've been doing a lot of research. I came across something called pyroluria a few weeks ago and had daughter tested. We just got the test results back today. They show that my daughter is borderline pyroluric. I may just be grasping at straws but I've found a few google results that pyroluria can cause insomnia as well as a few other neurologic symptoms.

 

My understanding is that pyroluria is basically a chemical imbalance causing an abnormallity in hemoglobin synthesis. Too much kyptopyrrole is produced. It binds to B6 and zinc and causes a deficiency since they are excreted in the urine. It isn't a condition recognized by mainstream doctors. I have a call into the chiropractic neurologist that my daughter goes to but he won't be in until tomorrow. I'm hoping that he can help us.

 

I was hoping that someone might have some knowledge about this.

[Perry]

Most mainstream medical personnel don't believe there is such a thing. I've never seen any convincing evidence that it's a real disorder.

[Lisa in Jax]

from treatment with B6 and zinc, which is the treatment for pyroluria.

 

Friends of ours have two adopted children. One of them had SEVERE behavior issues that became markedly better after testing for pyroluria and treatment with B6/zinc daily.

 

I know the owner of http://www.pyroluriatesting.com. She's a very nice woman, who should be willing to discuss it with you, if you'd like to learn more. Her number is on the website, and her name is Ellen. Why not give her a call to see what you find out?

 

In the meantime, you might try giving her low doses of P5P (a form of B6), some magnesium, and some zinc picolinate. Slowly and systematically increase her doses until you see if her insomnia improves. DO NOT exceed about .5 mg of zinc per lb of weight w/o testing her blood for a zinc deficiency. Too much zinc can cause problems if she's not deficient.

 

My son took HUGE doses of zinc for two years, and it helped him a lot. However, we had documented a deficiency of zinc, and continued to test him while giving the high doses. His copper was never high, but his zinc was VERY low, so we gave him high doses for quite a while. It helped tremendously!

 

If her insomnia is worse when you cut out gluten, she may need extra B vitamins (B complex, not just B6, as with pyroluria), b/c you've cut down on her B vitamin intake by cutting out wheat/grains.

 

Other ideas for treating insomnia:

 

Cut out all sources of dairy/casein as well as gluten.

Cut out corn syrup, colors and preservatives.

Consider giving 5-htp (the precursor to serotonin and melatonin)

Consider giving essential fatty acids ("fish" oil)

Cover ALL sources of light while she sleeps, including night lights, alarm clocks, etc.

 

Increase her magnesium and sulfation with epsom salts baths before bed. Start with 1/4c epsom salts in a comfortably hot bath. Over a period of a couple of weeks, work up to 1.5-2c per bath per night. Be sure to have her rinse well to wash off the grittiness of the epsom salts.

 

HIH,

 

Lisa

[Only me]

Thanks Lisa. That is the company where my daughter had her testing done. I wonder if your friend is the one I talked to one the phone today when they called with the test results. She was very nice but I felt bad because I really don't understand the whole thing 100%. I think I am just so overwhelmed and confused by everything that has been going on with my daughter lately and my head is swimming with an overload of information.

 

Hopefully the doctor will call me tomorrow and help me to understand this more. Otherwise, maybe I'll call Ellen back to see if she can explain it to me again.

[ohmel]

A good friend of mine had her daughter tested for a variety of metabolic disorders and when she got the results she told me that she thought I had Pyrrole Disorder. I had never heard of it but have suffered with a large variety of symptoms for as long as I can remember. Since the cure was so easy (zinc and B-6) I started taking it and felt noticeably better within weeks. We're talking life changing better. I then did more research on it and came across the following book: http://www.amazon.com/Depression-Free-Naturally-Eliminating-Anxiety-Despair/dp/0345435176/ref=sr_1_2?ie=UTF8&s=books&qid=1263344665&sr=8-2 Reading it I then started my husband on some different supplements (again, OTC and cheap, nothing special) and he too is feeling loads better. I don't want to get into all my issues but this has been by far the easiest, safest and cheapest treatment I have tried. So many conventional treatments do not work for those with Pyrrole disorder as the body metabolizes things differently.

 

Please PM me if you have any questions.

[Lisa in Jax]

I actually learned quite a bit about this when my kids took the tests. If you want to PM me the pyrrhole result, I'll take a look. Did you have the zinc and copper blood work, too? If so, send those numbers and I'll tell you how the ratio looks.

 

HIH,

 

Lisa

[Guest fightingtbi]

Hi everyone, I'm new to this board. I happened upon it, because I am quite sure myself and children have pyroluria. We have sent for the test kits and should have some answers in about 3 weeks. Right now we are off all supplements until the the kits arrive. I am currious about LIsa's statement, "I actually learned quite a bit about this when my kids took the tests. If you want to PM me the pyrrhole result, I'll take a look. Did you have the zinc and copper blood work, too? If so, send those numbers and I'll tell you how the ratio looks." What blood work should I ask for? Just zinc and copper. I understand that once you begin the protocol you will probably start dumping lots of copper, so taking binders and moppers would be in order to avoid a detox crisis.

Dosing info on the net is sure vague.

Are there some really good books out on the subject?

I'm not used to so many dead ends.

 

Thanks for all your help,

Linda

PS: is this a homeschool forum?

[Lolly]

Hi everyone, I'm new to this board. I happened upon it, because I am quite sure myself and children have pyroluria. We have sent for the test kits and should have some answers in about 3 weeks. Right now we are off all supplements until the the kits arrive. I am currious about LIsa's statement, "I actually learned quite a bit about this when my kids took the tests. If you want to PM me the pyrrhole result, I'll take a look. Did you have the zinc and copper blood work, too? If so, send those numbers and I'll tell you how the ratio looks." What blood work should I ask for? Just zinc and copper. I understand that once you begin the protocol you will probably start dumping lots of copper, so taking binders and moppers would be in order to avoid a detox crisis.

Dosing info on the net is sure vague.

Are there some really good books out on the subject?

I'm not used to so many dead ends.

 

Thanks for all your help,

Linda

PS: is this a homeschool forum?

 

Yes. Now, you will be overwhelmed with a sudden desire to withdraw your children from school and teach them yourself! You will withdraw them from their schools after reading about the wonderful benefits homeschooling provides. You will purchase books, lots and lots of books, and become addicted to searching out curriculum. You will be assimilated!

 

Jk! I hope you are able to find some help with your search. These boards are amazing.:001_smile:

[Lisa in Jax]

Linda,

 

You want to test copper *serum* and zinc *plasma* from LabCorp. The specific tests from LabCorp are important, b/c LabCorp's results make it easy to calculate the ratio.

 

You want a ratio of about one to one. If zinc is slightly higher, most people are fine. If copper exceeds zinc by a ratio of more than about 1:1.2, kids often have behavior problems (tantrums, etc.). Once copper exceeds zinc by a ratio of 1:1.4 or more, there can be more serious behavior problems.

 

If you call Ellen at http://www.Pyroluriatesting.com, you can get an order for the blood work from the her lab's doctor associated with the lab. For $95, the doctor will send you the order to take to your local LabCorp and the doctor will call you with results and dosage recommendations (if you need zinc, etc.) once the results are in.

 

Your local doctor is not likely to know the specifics of the zinc/copper or pyroluria tests, and probably won't know what the ratio results mean, so in my opinion, the consultation is well worth the money. The doctor consult will allow you to learn exactly what to do once your pyroluria and blood tests are in.

 

If you have more questions, email me. :)

 

Lisa

lkporter91 at gmail dot com

Hi everyone, I'm new to this board. I happened upon it, because I am quite sure myself and children have pyroluria. We have sent for the test kits and should have some answers in about 3 weeks. Right now we are off all supplements until the the kits arrive. I am currious about LIsa's statement, "I actually learned quite a bit about this when my kids took the tests. If you want to PM me the pyrrhole result, I'll take a look. Did you have the zinc and copper blood work, too? If so, send those numbers and I'll tell you how the ratio looks." What blood work should I ask for? Just zinc and copper. I understand that once you begin the protocol you will probably start dumping lots of copper, so taking binders and moppers would be in order to avoid a detox crisis.

Dosing info on the net is sure vague.

Are there some really good books out on the subject?

I'm not used to so many dead ends.

 

Thanks for all your help,

Linda

PS: is this a homeschool forum?

[Lisa in Jax]

I'm very aware of Pyroluria, and I've never heard anyone call it an "infection."

 

Googling the phrase brings up the same two or three original sources for the phrase "pyroluria infection" but none of which seem to explain how the term "infection" came to be associated with pyroluria.

 

It is my understanding that pyroluria is a disorder of metabolism -- i.e you body does not process zinc and b6 normally, so you need to supplement the amount you get from food and typical vitamins.

[Jean in Newcastle]

Notice that that person has only one post. If you google the words he has mentioned, you will come up with his own website on this topic. I'm not saying that he is wrong, but that he is motivated to get a specific message across. It looks like from his website that he is affected by this disorder but he also benefits from people ordering from his website too. http://www.55fix.com/

[Lisa in Jax]

Jean, if he'll benefit from someone buying his information, isn't his post spam?

[Guest fightingtbi]

I'll gladly be assimilated into the homeschool borg:grouphug:

This is something we are considering as I have had Lyme disease since late teens, not diagnosed until about 40. Found out I passed it onto the kids and there is no easy way to treat this thing and have kids in school. (Not only that but our politics are far to constitutional to continue to have our children indoctrinated into the progressive system) (Sorry if I offended anyone) We will probably hire a tutor to help keep the kids accountable as I am very sick.

 

Hoping the KPU will give us a boost though. It's an interesting thought about it being microbe more than genetic. (I have seen Michael post on other pyrolurics groups. He said he'd give the info for free - then reneged.) IDK. In the meantime, we'll treat with supplements.

 

Lisa: luckily my doc will order any tests I wish for. We usually go to Quest, but you think LabCorp is better on this? I've heard, once you start on the protocol that you will start dumping copper. (I would think these levels would be fluctuating quite a bit the first few months) When and how often is it wise to get testing? Is it good to have a baseline?

 

Also, there is one doctor who insists that you take the B's at least 10 hours away from the zinc. What do you think?

 

Sorry for all of the questions. One desperate momma here, as our 16 year has been and still is extremely aggitated (since birth). He temperament is close to destroying our family. I'm hoping KPU is a piece of the puzzle and will bring some relief soon.

 

I look forward to looking around the site:lol:

[Lisa in Jax]

 

Lisa: luckily my doc will order any tests I wish for. We usually go to Quest, but you think LabCorp is better on this? I've heard, once you start on the protocol that you will start dumping copper. (I would think these levels would be fluctuating quite a bit the first few months) When and how often is it wise to get testing? Is it good to have a baseline?

 

Quest uses different reference norms, so it'd be hard to compare "apples to apples" with results. I'd do LabCorp if at all possible.

 

I still think I'd talk to the pyroluriatesting doc, b/c she knows the ins and outs of testing and treatment. She can answer the questions about dose, timing and whether copper dumping is a problem. I can't answer you, b/c I only know what we were told for our situation. (My kids don't have pyroluria -- they just had low zinc.)

 

HIH,

 

Lisa

[Guest fightingtbi]

Thanks Lisa,

I will give the number a call on Monday and ask my doc to order the labs from Labcorp.

 

I would imagine a baseline is very helpful.

 

 

Blessings,

Linda

[Guest fightingtbi]

Lisa - lab results are in from LabCorp -

and I don't know how to interpret in the light of pyroluria.

 

Me:

Copper 122 (range 70-155)

Zinc 78 (range 70-155)

 

Son:

Copper 61

Zinc 82

 

I'm even more confused I thought most people with KPU have high copper. My son is sooooooo symptomatic. Maybe I've got this wrong.

 

Thanks,

Linda

[Jean in Newcastle]

Hmmm. That would make his copper low, wouldn't it.

[Guest fightingtbi]

Right, but people with KPU should have high copper. :confused:

[BlueTaelon]

Linda,

 

You want to test copper *serum* and zinc *plasma* from LabCorp. The specific tests from LabCorp are important, b/c LabCorp's results make it easy to calculate the ratio.

 

You want a ratio of about one to one. If zinc is slightly higher, most people are fine. If copper exceeds zinc by a ratio of more than about 1:1.2, kids often have behavior problems (tantrums, etc.). Once copper exceeds zinc by a ratio of 1:1.4 or more, there can be more serious behavior problems.

 

If you call Ellen at www.Pyroluriatesting.com, you can get an order for the blood work from the her lab's doctor associated with the lab. For $95, the doctor will send you the order to take to your local LabCorp and the doctor will call you with results and dosage recommendations (if you need zinc, etc.) once the results are in.

 

Your local doctor is not likely to know the specifics of the zinc/copper or pyroluria tests, and probably won't know what the ratio results mean, so in my opinion, the consultation is well worth the money. The doctor consult will allow you to learn exactly what to do once your pyroluria and blood tests are in.

 

If you have more questions, email me. :)

 

Lisa

lkporter91 at gmail dot com

 

 

I spent a week trying to figure out which copper and zinc to ask to have ran and I didn't find anything until now, a week after we had it drawn! My 11 yr old had a Pyrolle level of 90:( Testing me and lil bit now for it.