pyroluria

[Caryn]

This is mainly for Faith, but also anyone else who may fit the bill.

 

I'll start with a post I did way back when on it.

Why am I so Edgy? Learn about Pyrrole Disorder (Pyroluria)

 

The proper term for it is also Mauve, or High Mauve. It is hereditary and runs pretty commonly in families. We have more than one case of it in ours.

 

I will tell you from both Dr. McGinnis's standpoint and my own personal experience with it dealing with more than one family member that it is tied very closely with food intolerance. When the diet is under control the condition is not only manageable but becomes very easy to 'forget' you have it. It is associated with Schizophrenia (which is tied to undiagnosed Celiac, and thus digestive issues), ADHD, Autism (50% of cases), Celiac (which is our other dx), etc..... So digestive issues are a subfactor in my opinion.

 

Zinc supps are essential but that is not the only one that is imp., and the combos need to be monitored and balanced because high mauve means having such depletion that amounts considered toxic to a normal person are necessary for regulation and elimination of symptoms. It is a blood disorder. In our case we see infrequent flare ups during stressful times and when we 'go off the diet wagon'. We eat a diet high in the things that are needed for managing pyroluria, foods high in zinc, magnesium, and we take zinc, mag, and daily B complex. We also do probiotics in mulitiple forms including cultured milk products. We avoid nutrient pour food sources like refined sugars and complex carbs like corn. In our case B12 was needed as well even though not indicated in mauve as far as I know. Dr. McGinnis also wrote a paper that showed patients with mauve have a higher incidence of low glutathione than the average person. This affects immunity. In our case this was also true. As with Claire and a whole host of folks who posted about it on this forum years ago-- low glutathione is common in tics, T.S.

 

I do not know how common pyroluria is in T.S., tics or in the general population. But if it is in your family it is common with your clan. We keep a clean diet here and stay away from most grains. We no longer use high doses of zinc as it is no longer needed. But when symptoms spike (like light sensitivity when outside becomes more apparent, etc.....) we then up the dose until the symptoms subside.

 

A person dxd with this needs to be tested through urine at baseline (with no supps for I would say at least 48 hrs, but possibly 1 week) and then again after dx to test dosage results. And again every 3 mos as long as they are taking high doses of zinc. (over 50 and up to 100 mg a day is not uncommon in some cases and can be very toxic to the average person.) You need a doc that understands or is open minded to helping you manage it.

 

IMO the need for the high doses coincided with lack of absorption that was directly caused by gut imbalances. When the digestive condition healed then the body began absorbing the nutrients in the food better. Having said this, it does not mean that a diet change will 'cure' it. It is just another way to keep it in balance like with Celiac, Crohns, etc.... We still supplement although it is at much lower 'maintenance' doses now. High doses will cause nausea and stomach upset. A sign Dr. McGinnis said to watch for when we were dealing with this initially several years ago.

 

http://web.mac.com/autismprotocols/Site/Py...odymcginnis.pdf

http://www.ncbi.nlm.nih.gov/pubmed/1851710...mp;ordinalpos=5

 

 

Caryn

Edited November 23, 2012 by Caryn

[abbe]

 

Caryn,

 

 

Thanks for this. This was the missing link for me with Nicholas We also needed the b12 by the way. I am not doing high doses of zinc or b6 just steady every day. We use the primrose also what do you use for essential fatty acids???

 

thanks again

 

abbe

[faith]

Caryn..

thanks so much for thinking of me...how you doin girlie?

 

I admit, I've never gotten this test, I probably should have a long time ago, altho I've supplemented with the b6 and zinc as a trial. what I don't get is how are you supposed to know how much to give, I don't think they give you that rec with the results, do they?

 

abbe, did your son have any other symptoms besides tics in the past? ocd/attention, etc? all his issues are good now? but you also do topomax, correct?

 

thanks

Faith

[bmom]

Caryn, I have always wondered if this is a problem for my son who has PANDAS, but light sensitivity is a biggie for him. I just had him tested on the Spectracell 5000 vitamin profile which came back fine for zinc (although I supplement him with 50 mg prior to the test). It did show he was low in gluthione, B12, and several antioxidents (NAC, alpha lipioc acid). Is 50 mg of zinc toxic? I have cut it down to 25 mg after reading this post. Do you think the test results would indicate pyloria is a problem for him? I should have him tested, but do not want to take him off of supplements in order to do so at this point. He takes a B complex and 25 mg of zinc and his light sensitivity has been much better since he started the zinc.

[abbe]

Caryn..

thanks so much for thinking of me...how you doin girlie?

 

I admit, I've never gotten this test, I probably should have a long time ago, altho I've supplemented with the b6 and zinc as a trial. what I don't get is how are you supposed to know how much to give, I don't think they give you that rec with the results, do they?

 

abbe, did your son have any other symptoms besides tics in the past? ocd/attention, etc? all his issues are good now? but you also do topomax, correct?

 

thanks

Faith

 

faith,

 

 

Nicholas teachers said he didnt focus well in class and they still say that. He is my third child and my first is gifted (17 years old top 10 student in his class, just admitted to governors school) my second is very ADD so bad so that he has an IEP ( I never did meds) he said he had a shoulder tic one summer and I never saw it. I think Nicks biggest problems besides tics are moodiness and irritability. He is either and angel or very mouthy. (Just at home he is quiet in school so he can control himself) He takes 15 mg of topamax still because he has breakthrough tics here and there as I am "healing" him. He is 8 almost 9. Just this past week the neck tic popped up slightly. We go to Dr.Chung on Tuesday so we will see if he knocks it out. He has had more video game time lately. I only let him go for 0 minues once per day on weekend. Dad let him have more and also let him eat 2 oranges.

 

 

abbe

[patty]

caryn,

 

thx for posting such important & detail information on pyroluria. i have been thinking about it lately again.

 

pat

[Caryn]

Is 50 mg of zinc toxic? I have cut it down to 25 mg after reading this post. Do you think the test results would indicate pyloria is a problem for him? I should have him tested, but do not want to take him off of supplements in order to do so at this point. He takes a B complex and 25 mg of zinc and his light sensitivity has been much better since he started the zinc.

 

It is hard to know whether or not he has pyroluria without the urine test. I am sure other conditions can cause low zinc levels, as could certain diets exasperate it. Not knowing his weight or this lab testing, it would be impossible for anyone to give an educated guess on dosage. We were given a script that included 50 mg of zinc for my son at age 4 1/2 after his test results came back positive for pyroluria. He takes a much lower dose now and he is seven. He has no light sensitivity issues, but last summer during soccer season I saw it emerging again and so I upped his zinc a while until he seemed okay again, so again-- it can flare up for no apparent reason and then go into 'remission'.

 

You really have to take him off the supps to get a good baseline. My hunch is that the test he took did not measure his body's ability to absorb without the 50 mg. He may need the 50 mg. Did your doctor prescribe that amount? Just wait until you have a good week off of school and he has time to recuperate when you do decide to test for mauve. I understand the fear of stopping supps. BTDT. You may be able to help him better in the long run if you have a proper dx, tho.

 

I understand that PANDAS has a different treatment protocol than T.S. but it could be that there are some underlying metabolic issues shared by both conditions that can alleviate symptoms or alter the 'terrain' if you will. I want to stress this because Pyroluria is generally considered a condition that attacks folks with underlying digestive issues. Correcting these issues would make it hard for organisms to 'flourish' in the PANDAS child and thus make reoccurring episodes less likely. My opinion, of course. Although we did not deal with strep issues we had many courses of antibiotics in my son's early years due to many different kinds of infections. He was prone to microbe invasions. The underlying pyroluria, of course, weakened his immune system. The side of the family in which this condition originates has several relatives with digestive and immune based issues, of various kinds. He gets his celiac from the other side. Lucky kid. Nice gene pool, eh?