Pyroluria and testing

[Sheila]

I saw some discussion on a thread here about testing for pyroluria (Kp analysis). It was taken from another site, and suggested that testing for this is simple. I have deleted that sentence from the person's post because of new information on this.

 

Dr. Walsh at Pfeiffer Treatment Center outside Chicago has reported that it is difficult to get a proper Kp analysis to the lab. He says that the kryptopyrrole molecule is unstable and will disappear rapidly at room temperature or if exposed to bright light. "The urine sample must be placed in a freezer immediately after acquisition. Kp can be lost in the freezer if the temperature isn't well below 32 degrees F. We've also learned that exposure to bright light results in breakdown of the Kp molecule. Finally, the sample must be maintained in a frozen condition during shipment."

 

Other info: He has also said that testing of pyrolurics shows that some can have major variations in level during a day. "Stresses, illnesses, injury, etc can be expected to elevate Kp levels. Medical history and review of symptoms are vital to this diagnosis."

 

He points out that it is a challenge to distinguish pyroluria from overmethylation (low blood histamine) because the symptoms are similar. And, the symptoms of pyroluria can be "muted" in undermethylated, obsessive/compulsive persons because pyrolurics are usually underacheivers while those with OCD are more high acheiving perfectionsts.

 

So, if someone truly suspects this condition, I think it is important to see someone who understands it well or who will get the necessary information to proceed.

 

Walsh suggests that most pyrolurics respond quickly to the B-6, Zn, C, E therapy he recommends. Primrose oil can also be beneficial while fish oils tend to make this group worse. He says most start to respond within a week unless they have a severe mental illness, major chemical imbalance, or are unable to absorb the nutrients. In some cases it takes a considerable time to balance out.

 

Walsh says that some of the symptoms of pyrolria include stunted grown, delayed puberty, unpleasant body, and skin strech marks.

 

A couple of weeks ago I was at an ACAM conference where the delicate nature of Kp testing was also emphasized.

 

Sheila

[Heather]

Sheila,

 

Thanks for the infomation on the pyroluria testing. I sent away for the test kit a couple of weeks ago and then I received a phone call saying I had to give my credit card for shipping to Canada but they were unsure of the cost so I let it go for now, thinking I would look into it further when I had more time.

 

Anyway, with this test kit they say they will send you a freezer pack and tell you to avoid sunlight with the vial before it gets shipped to them. Do you believe that this is enough precaution in order to get an valid test result? I have not heard of this type of freezer pack shipping and just wondered about your thoughts on this, if even to get a rough idea if pyroluria may be an issue for us. Thanks.

 

Heather

[Sheila]

Heather, this is a lab Dr. Walsh has recommended for it:

Urinalysis for kryptopyrroles (Direct Healthcare Access is the lab, 847/299-2440).

 

They are in the Chicago area. Maybe you could call them and ask about how to proceed. I didn't see a website, but maybe missed it. There are only a handful of labs around the world that are recommended by some of the experts in this. (I didn't see a Canadian one on the list, but that doesn't mean yours isn't good--but I would guess a regular ice pack won't work, especially in the summer, and they didn't seem to meniton freezing the sample.)

 

Maybe you could share what you learn from Direct Healthcare. I'd be interested to know (and the cost, too!) Thanks, Sheila

[Heather]

Sheila,

 

Thanks so much for the lab information and the recommendation. I am going to call Monday morning and see what they say. I will leave a post to share what I find.

 

Your expert and knowledgeable opinion is always appreciated. Thanks for checking in.

 

Heather

[Heather]

Sheila,

 

Thank you so much for the recommendation for the lab. I phoned the lab this morning and I talked to a woman who was extremely helpful in explaining the whole process to me. She said that I would be assured of a valid test result if I went to a local ice cream store and got some dry ice. If I did pack the specimen in a styrofoam container with dry ice, then it wouldn't matter if the package was held up for a couple of days for any reason.

 

She said if I use the regular ice packs I would need to freeze the speciman for 2 days in between 4 packs and even then it would not guarantee to be frozen once they received it. It would also need to be sent overnight delivery and if held up for any reason, we could lose 20-50% of the kryptoles (sp?).

 

Anyway, she also said that there is a doctor on their staff who would discuss the results with me and give me advice depending on the patient's age and symptoms. She is also sending me a list of Canadian doctors who recognize and treat this condition.

 

I couldn't have asked for better service over the phone as she was extremely polite and full of information for me. I am glad that I waited now until I had the time to do this properly.

 

Thanks again Sheila.

 

Heather

[Sheila]

Thanks for getting back to us, Heather. We all learned something! I hope the effort is useful for you. Sheila

[Claire]

Heather and Sheila,

 

Heather--How long did the new lab want you to stop supplements? FJ's Bio Center site just said go 3 days without zinc and b6.

 

I just heard my son's and my test results over the phone from our doctor. I was a 4 and he was a 12. According to Biocenter, this was normal. We froze the urine for 1 day and packed it between the 2 ice packs. FJ's post makes it sound like over 10 could be an issue still...

 

Anyway, FJ says that antioxidants, B6/P5P, zinc, magnesium and antioxidants (ALA and glutathione)--basically everything my son takes anyway. However, FJ likes much higher dosages than my DAN doctor does. I am worried he may not be getting enough though, if it is pyroluria.

 

Given the possibility of elevated mercury in many kids, I would think that large doses of antioxidants effectively become like chelation which should be monitored.

 

claire

[Heather]

Claire,

 

Thanks for the input. I actually forgot to ask her about taking supplements before since I was so focused on the the shipping issues. She said the kit would come with complete instructions so I assume that will tell me. If it does not, I will phone her back to ask.

 

That is good you found your levels within normal range. Hopefully, the result was accurate for you.

 

Heather

[Claire]

Sheila,

 

Thanks again for that link, and thanks to Sheila or Heather thanks for sending Ellen our way.

 

Wow, I just reread Sheila's post and saw the part about fish oil... Though I never noticed with my son any change either way.

 

I am starting to add zinc and b2, since he is borderline at 12, and may have him retested. I did put it in the freezer right away, and froze it for a full day (coincidentally) before sending it and put it in between 2 freezer packs before mailing though. I am not sure what difference freezing a small vial for 2 days vs one would make though, since I froze it independently from the packs, it definitely got frozen. It worries me that Ellen said the difference between labs was so substantial--with BioCenter being so low. But maybe it was that it was shipped twice to BioCenter, with more time to decompose or whatever. In any case, a second test wouldn't hurt, though my doctor may think I am weird.

 

Man, wouldn't it be cool if this is all it took to solve the CRT screen problem? Somehow, I just don't think it is that simple, with his elevated mercury, low antioxidant, vitamin deficiencies, food allergies, and yeast issues. Odd though, because his B6 and zinc tested fine and MINE were very low. Since I sent the vials together, it makes me wonder if the results got switched.

 

Claire

[Claire]

I redid the Pyroluria test at Biocenter. I wanted to use the new lab but it required a doctor signature and our DAN doctor thought that my son's '12' was nothing to worry about.

 

Biocenter says under 20 is fine, and Direct Healthcare Access says 10-20 requires some treatment. FJ on Braintalk thinks 10-20 is an issue.

 

Anyway, this time I wrapped it in foil immediately (no foil last time). Both times I froze it, but this time I added an extra freezer pack. (no dry ice handy up here).

 

This time his result was a 17.

 

Now that is enough to wonder. FJ says more stress ups the number and this is low stress summer. Now I want to use Direct Healthcare Access, but I have to explain to our doctor why I want a 3rd test. Since biocenter thinks it isn't an issue, they offer no treatment plan, while the other lab does. Plus I get the impression the other lab's results may be higher.

 

Claire

[Claire]

2 links I found on Pyroluria. These are not studies, but the authors seem informed. This kind of information is what reinforces to me the need for testing.

 

The first link states that many people with ASDs supplement with B6. And that some of the B vitamins actually feed the yeast, so you should be careful unless you have pyroluria. Now I won't supplement my son with B6 until we take the new pyroluria test and get the results back.

http://www.enzymestuff.com/conditionpdd.htm

 

The 2nd link says that Omega 6's are important for pyroluria (in addition to B6 and zinc), but that you should avoid the Omega 3's with this condition.

 

http://www.nutritional-healing.com.au/cont...ading=Pyroluria

 

If all this is true, then the one size fits all of both B6 and Omega 3's, are actually counterproductive. e.g if you need the B6 then the Omega 3's can be bad. If you don't need the B6 then it can be bad for yeast. I started adding the B6 on June 17th. 2 weeks later he took the yeast test--who knows, maybe this is what elevated his yeast. Anyway, I will stop the b6 supplements now until he tests for the pyroluria test at the new lab, then let our DAN doctor (and the lab) help me figure out how to deal with the possible conflict.

 

If the above is true, both mercury detox and pyroluria cures feed the yeast. Man those yeast little guys remind me of cockroaches--they will outlive us all (actually they will, since I read this is what decomposes us when we die). Sorry if my analogy is a bit gruesome!!

 

Claire

[Guest Jean]

Hi Claire,

 

I may overlook the content. Whcih lab that you used for your test? How long did it to take to get the test back? I did google search on "Pyroluria", then I'm wondering if I should run the test for my son.

 

Thanks for the info. in advance!

 

Jean

[Claire]

Hi Jean,

 

I used Biocenter for the test because no doctor's signature was required. 316-684-7784. It was $40 plus shipping of about $35.

 

If you can get a doctor's signature, then I would go with Direct Healthcare access at 847-222-9546. This is the lab Sheila Rogers mentioned. They are associated with Dr. Walsh and Pfeiffer. The cost is the same I believe. Also, for the 10-20 borderline range, they will give treatment recommendations, while Biocenter doesn't. You do have to call the doctor on staff to get the treatment recommendations (or maybe you have to have your doctor do this?).

 

Please remember to wrap foil around the vial immediately and put it in the freezer. Buy 2 extra freezer packs to go with the 2 they send, and wrap the loose freezer packs around the foil-wrapped vial while cold but not frozen for a more 'molded fit' . The foil and extra freezer wrap do make a difference, as I posted earlier. Since then, Direct Healthcare (Ellen) gave me more specific recommendations. I am waiting to get their kit.

 

Claire

[Guest Jean]

Hi Claire,

 

Thank you very much for your timely response! I'll look into it.

 

Jean