Pyroluria

[romiaary]

Thanks again for other posts to my message yesterday. I have done research in the past and don't know why I never stmbled upon the topic of pyroluria. It is interesting because my sons have many of the symptoms including being told in the past that one had a low zinc level. I want to have the testing done. Has anyone had a good place they can recall having this done? Has anyone had success if they were found to have it?

[Spring]

Hi,

 

I had my son tested from the following lab:

http://www.pyroluriatesting.com/?page=shop...2955d7fa6e15600

 

You can call the lab to ask your question or order the kit.

 

The contact person's name is: Ellen Hanson

[Guest]

romiaary,

 

Yes, I've been tested for pyroluria and have it. After starting treatment by adding that zinc in, which I was already taking b6 made a big difference. The thing I noticed the most was instead of taking 1-2 hours to get to sleep at night I could get to sleep within 10-15 minutes. Zinc also makes me more relaxed. It also helps my tics. About a month ago I found out for sure, pyroluria runs in my family. My younger sibling (no ts) just having trouble with sleep and a few other things tested positive for pyroluria also.

 

Carolyn

[evelynr]

Hi:

 

I never heard of Pyroluria before, but I will certainly address it to my pediatric neurologist tomorrow, since my daughter has an appointment. I will keep you informed.

Evelynr

[ad_ccl]

Hi Everyone,

 

I have been having some computer problems so have been out of touch a few days. We did get our results for pyroluria back today - 43.75 - my naturopath is waiting for the phone consult with the doctor there. I am anxious for any info - patience is not one of my virtues! Any feedback on this would be greatly appreciated. What supplement amounts I should expect, how long to take them etc. when you retest.

 

Thanks in advance.

 

I must admit I was happy to get the results we got, I feel like it could be another piece, or better yet one of the final pieces of the puzzle - the photosensitivity is a real pain and if this helps solve that it would be wonderful. I will keep you posted. We should have the OAT test back soon too.

 

Marie - hope your son is doing well.

Karen - I will reply soon to your questions

[kim]

ad ccl,

 

I went to Braintalk to look for some of FJ's replies and saw that you had posted your question there too. I know there is alot of info. there, if you have the time to search for it. I thought from memory (which isn't all that reliable) that your son's # was quite high. I would feel the same way you do, relieved. I remember FJ saying that you are lucky if this disorder is the source of your problem, since the treatment is so effective.

 

Way to go, in finding this out! I will be watching for the responses you get also, and I know you will let us know what changes you see with treatment.

 

Kim

[Spring]

ad ccl:

 

Here are some old threads from this board:

 

http://www.latitudes.org/forums/index.php?showtopic=988&hl=

 

http://www.latitudes.org/forums/index.php?showtopic=947&hl=

 

My son's Pyroluria level is in the range, but he has high mercury and other heavy metals.

 

Good luck on your treatment!

[kim]

ad ccl,

 

Could you tell me what lab you used for your son's test? How long did it take to receive once you ordered? I'm thinking, if the boys have to be off of their "stuff" for a few days for the Great Smokies test, it is kind of silly not to do this one too.

 

FJ encourages everyone to have this test done at the start, and I guess after reading what's happeneing with your son, it's something I should have done a long time ago.

 

Any info would be appreciated.

 

Kim

[ad_ccl]

Hi Kim

 

I did my testing at the pyroluriatesting.com Direct Healthcare Access Lab

1-847-222-9546

I think it took about 9 days from the day we sent it to the day the faxed results were sent to my doctor. Then she called for her consults which was done the next day.

I have known about this test since my beginning research but for some reason waited on it - there are always so many other things going on. I am so glad we did it - we are starting on the increased doses of vitamin B6 and Zinc - I am going to increase slowly - and I will let you know what changes we see. The OAT test should be in later this week.

 

I think it only suggested 24 hours off vitamins, I did 3 days to be sure - and no apples, pears, grapes and a few other things - which I can't recall as my son did not like them.

 

Good Luck

[kim]

ad ccl,

 

Thanks for the reply, complete with phone #. Is a Dr.s signature required?

 

Kim

[Spring]

Hi Kim,

 

My son also did the test from the same lab. A Dr. signature is not required. However, you'll have to provide a doctor's name and address. The lab will send the test result to the doctor's office. In my son's case, I put my DAN Dr.'s name there (and my DAN Dr. didn't mind). Also, when you call to order the kit, you may ask for Ellen Hanson. She'll anwser your questions nicely.

[ad_ccl]

Just a correction - for pyroluria he was off vitamins for three days. The grapes, apples, pears, cranberries were the foods he had to be off for 24 hours prior to the OAT test. Sorry if I caused any confusion.

 

We had our naturopath order the test and send it for us. She then also did the consult with the doctor at the lab.

[mmazz]

Hey Allison:

 

Great to hear that you have found another piece of the puzzle. I never did have my little one tested for that, but he did have all of the symptoms. As of today we are squiggle free. Socks do not seem to bother him anymore and he acctually can wear shoes that fit instead of being a size to big. Loud sounds don't seem to bother him anymore and his pants can be worn on the waist instead of the hips. He has dream recall now and so many other things that seemed to be an issue are no longer. Tics are way down, even when we took a mini vacation. There was no juicing nor were we keeping watch on the diet. Just no junk, other than that it was eat what you want. He did real well. I finally felt normal for a change. I hope that this lasts. Although the downs days are not as frequent, when they hit they seem to hit even harder. But I have to admit that jucing, although time consuming, has made a world of difference for the entire family. FYI, this is the first year for me that I actually got a tan. Usually I would burn and my skin would peel. I read about the reaction of your body to environmental issues like the sun and how beta carotine helps your body protect itself from these elements and WOW what I read and followed did work. There is a lot to be said for good nutrition and there are so many little things that I have noticed that make for a bigger picture. I know in my heart of hearts that my sons tics will be apart of him and that we will batlle his triggers just like my other son and husband battle their allergies to pollen. But if what we do here makes a difference to the degree of which he has to endoure than it is so worth it. So any new readers who have come across this site/post, please know that we are what we eat and how we live. Even if what you try does not immediately fix your issues, stick with them for nutrition does take time and that what you start today can and will alter what you have to endoure in the future. Allison, I know that we started our journey at the same time and that we were the newbies trying everything that came down the pike. I remember our wishing that there would be one day that we would be able to read past posts and realize just how far we have come. I did re-read some old posts and I am really proud of the things that we all have learned and are truely blessed that I have found people like you to help me through this journey.

Andy, I am so happy that things are finally going well and I pray that they continue for you.

Kim, I am also happy for your good results and hope things continue for you as well.

Chemar- thanks for all that you do and keep sending those HUGS.

Claire- where are you? You are missed very mcuh.

 

 

May God Bless and be well.

 

Marie

[Giselle]

Hi ad ccl, just wondering what the OAT test said - did you get it back? Congrats on finding the pyroluria! That must feel great.

Thanks to all of you for paving the way!

Giselle

[ad_ccl]

Hi Giselle,

 

The OAT test is the Great Plains Organic Oat Test - looks at yeast among a few other things. Test results actually came in today and I got the over the phone info and will pick up the hard copy tomorrow. Yeast is a problem but seems mild, I am sure the probiotic is helping a lot - (he is on antibiotics for the PANDAS) interestingly it too showed a deficiency in B6 - but that B5 was fine - yet the supplement he has been on is Bcomplex - again showing his body is not keeping the B6. I will post more info when I see it all in black and white. So much of this goes over my head!!!!!! I have been reading your posts on Braintalk - I am so happy for how well your son has been doing, thanks to all that you have been able to do for him. Thank goodness for the internet!!

 

I am seeing my ped. tomorrow and will discuss the antibiotics. The naturopath is trying to be at the appointment as well. I can't believe I am actually considering him going off the antibiotics. I am so on the fence about the whole thing. It is hard to be a mom!