pyroluria

[michele]

I was hoping someone might be familiar with B6 use for pyroluria. I was confused about the difference between B-6 and B-6 P5P. Does B-6 have maganese? I also want to give zinc and primrose oil. I am not certain on amounts yet. I was going to start with a low dose of each. I know Caryn had a good site link but I am not sure if I will need to give both B-6 and B-6 P5P. I have a phone conference with the DAN dr. next week to go over the blood results. I just figured I should start him on something now because I guess the change can be almost immediate.

Michele

[Caryn]

I was hoping someone might be familiar with B6 use for pyroluria. I was confused about the difference between B-6 and B-6 P5P. Does B-6 have maganese? I also want to give zinc and primrose oil. I am not certain on amounts yet. I was going to start with a low dose of each. I know Caryn had a good site link but I am not sure if I will need to give both B-6 and B-6 P5P. I have a phone conference with the DAN dr. next week to go over the blood results. I just figured I should start him on something now because I guess the change can be almost immediate.

Michele

I know that the P5P is more easily absorbed. High doses of B6, whichever form you use, over time will deplete other B vitamins. You could get a good multivitamin (no iron or copper) and use the B6 vitamin of your choice. Amounts of zinc depend on zinc depletion levels of the person. Optimally, the person should have a test prior to supplementing, especially if you suspect they are very pyroluric. (Borderline test results are 11-20, high results are 20 and above) Severe cases of pyroluria need high, seemingly toxic doses of zinc. The health food stores sell zinc status as a way to measure depletion, but I don't know of anything to measure toxicity. Error on the side of caution, that is the best bet until you have the proper testing done. Two capsules of primrose oil a day should be fine, one in the morning and one at night.

Caryn

[michele]

We did do the testing from Direct Healthcare his kryptopyrrole urine levels were high 28.50. We use Nordic Natural Berries for a multivitamin. Four a day. I was not sure on the B-6. P5P seems like the new recommendation. I did not see any zinc levels on the blood tests. Just that he was low in iron saturation. I did not see a zinc status on the results. I thought I would start with low doses like 30 mg zinc and 50 mg b-12. The b-12 is a capsule so I don't know how it could be divided.

Michele

 

 

I was hoping someone might be familiar with B6 use for pyroluria. I was confused about the difference between B-6 and B-6 P5P. Does B-6 have maganese? I also want to give zinc and primrose oil. I am not certain on amounts yet. I was going to start with a low dose of each. I know Caryn had a good site link but I am not sure if I will need to give both B-6 and B-6 P5P. I have a phone conference with the DAN dr. next week to go over the blood results. I just figured I should start him on something now because I guess the change can be almost immediate.

Michele

I know that the P5P is more easily absorbed. High doses of B6, whichever form you use, over time will deplete other B vitamins. You could get a good multivitamin (no iron or copper) and use the B6 vitamin of your choice. Amounts of zinc depend on zinc depletion levels of the person. Optimally, the person should have a test prior to supplementing, especially if you suspect they are very pyroluric. (Borderline test results are 11-20, high results are 20 and above) Severe cases of pyroluria need high, seemingly toxic doses of zinc. The health food stores sell zinc status as a way to measure depletion, but I don't know of anything to measure toxicity. Error on the side of caution, that is the best bet until you have the proper testing done. Two capsules of primrose oil a day should be fine, one in the morning and one at night.

Caryn

[emma1]

Michele, I am interested in this issue and have been researching it. My doctor did not mention it; many articles say that this is not an illness recognized by "mainstream" doctors -- did Dr. Murphy comment on this? My doctor has been very cooperative so far, but I am constantly concerned that I am going to push him beyond his comfort zone.

 

Anyway, as I was searching this forum, I did find this post from "Claire" which I thought might be somewhat helpful (though as I recall, your son is tiny, so these level might be too high):

 

 

 

Pfeiffer says that 10-20 still needs treatment if symptoms exist.

 

For a value of 21, they recommended 300 mg B6 and 25 mg P5P!

 

We didn't do this much, but it varies for everyone.

 

As you know, my son hasn't had tics in 13 months--well before we uncovered the pyroluria. I can't say the direct impact of treatment on him, but with 100 mg B6 and 50 mg P5P, his pyroluria is only 8.5 or so.

 

P5P is the activated form of B6 and is less toxic than B6. This is why I give more P5P and much less B6. My DAN doctor likes P5P better than B6. I also do zinc.

[michele]

So Pfeiffer gives recommendations? That is alot of B-6. 150bmg seems like alot too. Andrew is 38 lbs and was at a 28.8 level. I did ask Dr. Murphy she seemed to think it was one persons medical explanation for something through their own research. Dr. Gaines laughed off the whole Environmental approach to medicine. She didn't seem too concerned on his levels she said vit b-6 and 12 are fine to supplement. She didn't give amounts to use. It does concern me he tested high for this. Maybe this could really help him. My husband and his family exhibit alot of these symptoms. There is a long line of mental illness though they are all in denial. I should accidently send the website to his mom! She is the most difficult individual I have ever encountered. She seems to have made a lifetime out of causing family divisions! Her mother did the same thing. It is so sad.

Michele

 

Michele, I am interested in this issue and have been researching it. My doctor did not mention it; many articles say that this is not an illness recognized by "mainstream" doctors -- did Dr. Murphy comment on this? My doctor has been very cooperative so far, but I am constantly concerned that I am going to push him beyond his comfort zone.

 

Anyway, as I was searching this forum, I did find this post from "Claire" which I thought might be somewhat helpful (though as I recall, your son is tiny, so these level might be too high):

 

 

 

Pfeiffer says that 10-20 still needs treatment if symptoms exist.

 

For a value of 21, they recommended 300 mg B6 and 25 mg P5P!

 

We didn't do this much, but it varies for everyone.

 

As you know, my son hasn't had tics in 13 months--well before we uncovered the pyroluria. I can't say the direct impact of treatment on him, but with 100 mg B6 and 50 mg P5P, his pyroluria is only 8.5 or so.

 

P5P is the activated form of B6 and is less toxic than B6. This is why I give more P5P and much less B6. My DAN doctor likes P5P better than B6. I also do zinc.

[kim]

Michele,

 

You may want to try a sublingual B12, instead of a capsule. The kind that melts under your tongue is supposed to be more absorbable. B12 has a reputation for increasing yeast on the autism bds. You may want to watch for any symptoms of increased problems in that dept. Some say sublingual methyl b12, and some say a mix is better (methylcobalimin, cynocobalimin, etc) to start with, before switching to methyl b12. Again, without a recommendation from your Dr., just watch for your son's reaction. If he doesn't do well, with what you bought, you will be able to report this to your DAN.

 

I wanted to ask you, does your son have any numbness in his feet, ankles, lower extremities, that you are aware of?

[Caryn]

Michele,

Best rule of thumb on the B6 is to continue to give it until your child has dream recall. Vivid nightmares or dreaming that disturbs a good night's rest means too much B6. Also, don't give it before bed. Whoa! I have made that mistake. Last dose should be around 4:30-5 p.m. if bedtime is between 7-8. We give milk with magnesium (kids calm) before bed.

FYI, low iron that is not corrected with iron supplements is a sign of celiac's disease I recently read. Just thought I'd throw that out there. Zinc status at the health food store will let you know if your child is deficient in zinc. Just start with a low dose and increase until the status shows there is no longer a deficiency (unless you do a blood test for zinc levels). And keep testing. Many times these patients require higher doses at first to balance the system out, and once the tissues are saturated they go on a maintenance dose. Canker sores is another sign of zinc deficiency. I'll throw that out too.

This is also a condition with high stress factors. Try to keep home life as calm and peaceful as possible. Also, do your best to curb activities if you need to. Once the anxiety tapers off you can begin to tackle more stuff again. In our case I noticed a big difference with my ds when I focused on keeping him relaxed.

Low zinc will cause problems with sense of smell. Enhanced smelling is a sign that things are beginning to balance out again. There is something too about a metallic taste in the mouth--I have to reread my stuff and get back to you on that one. Maybe someone else recalls?

Hope this helps.

My brain is tired and the dishes await.

Hm. I hate when I procrastinate!

Caryn

[Caryn]

I wanted to ask you, does your son have any numbness in his feet, ankles, lower extremities, that you are aware of?

Kim,

what is that a sign of? B12 deficiency? Too much B6 without enough magnesium? I thought I read something about that somewhere.

Caryn

[emma1]

Michele, I was researching this topic more, and I wanted to let you know that I did come across a post saying that children with pyroluria need to take Omega 6 (like evening primrose oil) but they do NOT do well on Omega 3 (fish oil). I do not know if this is true, and if Dr. Murphy said to use it, I certainly would use it if it were me, but I did find that connection of interest, and thought you might want to pursue it.

 

Also, on the B6 -- Bontech which makes vitamins for TS has 50 mg of B6 in it (for you son's weight) -- and that is 2500% of the daily requirement.

[Caryn]

Michele, I was researching this topic more, and I wanted to let you know that I did come across a post saying that children with pyroluria need to take Omega 6 (like evening primrose oil) but they do NOT do well on Omega 3 (fish oil). I do not know if this is true, and if Dr. Murphy said to use it, I certainly would use it if it were me, but I did find that connection of interest, and thought you might want to pursue it.

I read the same thing. In ds's case, our doc wanted to continue fish oil. It is my understanding that extreme cases of pyroluria have omega 6 deficiencies. I have to double check my facts, but if I remember correctly, there is a conflict between omega 3s and 6s when a person has a severe deficiency in the O6s.

Anyone remember for sure?

We are using Nordic Naturals 3-6-9. Seems to be working nicely.

[michele]

I also read with Pyrrole Disorder people can't tolerate omega 3's. I am waiting to talk to the DAN Dr. to treat the Pyyrole. I returned the vit b,zinc and primrose. It will be interesting to get his take on it. I asked Dr. Murphy and she did not seem to know about Pyyrole or the effect of Omega 3's on them. She just said if he can't tolerate fish oils just don't give it. Emma had a good point about the Bonnies Vitamins. They may be really good. I was nervous about giving so many pills. The 3,6,9 Nordic Naturals include the omega 3's? These work well for you and you have pyrrole? How else do you treat it? Has it worked? Thanks for the information.

Michele

 

Michele, I was researching this topic more, and I wanted to let you know that I did come across a post saying that children with pyroluria need to take Omega 6 (like evening primrose oil) but they do NOT do well on Omega 3 (fish oil). I do not know if this is true, and if Dr. Murphy said to use it, I certainly would use it if it were me, but I did find that connection of interest, and thought you might want to pursue it.

I read the same thing. In ds's case, our doc wanted to continue fish oil. It is my understanding that extreme cases of pyroluria have omega 6 deficiencies. I have to double check my facts, but if I remember correctly, there is a conflict between omega 3s and 6s when a person has a severe deficiency in the O6s.

Anyone remember for sure?

We are using Nordic Naturals 3-6-9. Seems to be working nicely.