I have learned that the Cytochrome P-450 pathway is involved in drug metabolism. It is also the pathway that can prevent detoxification from occuring properly in those whose livers are comprised. Here below is some research that I did.
I have learned that Doctor's Data has a test for this...Does anyone know which one? Also, glutathione is probably necessary to help the detoxification process:
More on liver toxicity due to pathways that do not detoxify well in the liver--
[ 15. August 2008, 12:18 PM: Message edited by: ArtistDi ]
Posted by sameetra (Member # 16639) on :
THANK YOU!
Having been diagnosed with Porphyria by my Gastro last Summer - this is of much interest to me.
Good Links!
Posted by lou (Member # 81) on :
Makes my head spin. I am getting so tired of being my own expert in infectious diseases, immunology, biochemistry. This is so complicated. And what doctors even have the time to sort all this out for every patient?
Thanks for the info though. Makes sense that there would be all these interactions and variations in patient response.
Posted by ArtistDi (Member # 2297) on :
Yes, I think that doctors are becoming more aware of this pathway and that others have to learn more about it. The llmds might do well to consider this type of testing in patients who don't do well with drugs or may need different types or smaller doses.
I think that this could make a huge difference for certain patients.
Anyways, it is tough being our own doctors, but I know that I uncovered a couple of things related to my own medical issues that proved true. So, it does pay to try to become as informed as we can be to try to achieve the best optimum health.
Di
Posted by Keebler (Member # 12673) on :
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ArtistDi -
Great links. Thanks.
I would want to know a lot more about the Doctor's Data tests for porphyria. I do not think many doctors would respect them since many doctors look down upon Doctor's Data heavy metal tests.
I need to read more about it, and DD may be a good test, but it may not be specific enough and if someone has porphyria - it's important to get documentation that most doctors will recognize.
Even my labs from MAYO's were ignored by doctors after my sepcialist retired.
MAYO has been the main place for testing - and it requires blood, 24-hour urine AND 24-hour stool collection. That's a lot to send in.
MANY tests must be done on all three sets of collection - and the blood draw must be shield from light with foil around the test tubes as they draw. Handling from there must be done in a specific way.
The poor man's porphyria test is good for just one type of porphyria, but even then, it may not indicate a genetic porphyria, but a temporary rise in porphryins.
That test would be to put one's urine in a clear glass jar and place in the sun - preferably on a patio or deck (of course, away from nosy neighbors). If the urine turns purple, bingo!
However, not all porphyrias would have purple nor is the color always purple. Different porphyrias have different colored urine during attacks. Some don't have changes at all.
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Yes, this makes one's head spin. And, the tricky part is that although certain meds can make porphyria worse - or even in someone without a genetic porphryia - can increase porphryins to dangerous levels,
SO CAN INFECTIONS. So, infections must be stopped.
With all the lyme protocols' focus on liver support and getting out the toxins is good for everyone.
I do think many herx reactions and many unexplained hospital or medication deaths can be connected to excess porphryins.
Oh, but I'm still very stuck trying to figure out how to get well - on a shoestring and a
I also think that, in some cases, if the liver can heal, it can work better in regarding to making the enzymes needed to prevent excess porphyrins. It's all about the health of the liver.
Still, it is about VERY SPECIFIC enzymes and we can't assume that all liver support will do exactly all that is needed.
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And, for those with exercise intolerance, - or heat sensitivity - some research indicates that the liver may be a big reason.
Exercise - or heat - pushes the liver and if the liver just can't keep up to begin with, exercise can result in aggravating porphyria.
that is why gentle, slow activity may be less stressful for such patients. Tai Chi or Qi Gong, etc. strolling.
Beta carotene can help. And, glucose. Of course, anti-candida measures need to be in place, too, then.
My doctor told me to eat a small candy bar a few times a day. I ignored that advice, but am still trying to find a healthy way to do this.
d-RIBOSE may be an answer, but that's just a personal hunch of mine and I've not seen any research about that and porphyria yet.
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I was dx with two types of chronic porphyria around '95. Then 3 TBD in '97.
So this is a subject very close.
The tests you mention may not be enough. And, even the top tests can only test during an acute attack.
this is very complex. I would be very careful with your money just now. There are some genetic tests through the American Porphyria assoc. sites.
Still, chronic or secondary porphyria can exist and not be a genetic. Or a lyme patient could have a undiagnosed porphryia.
There are at least 11 types.
My hands are already at their max so I can't type anymore.
I will come back and paste some previous notes and links.
Also, search here, at LymeNet, for porphyria or Cytochrome P-450. there have been some recent threads.
And, most doctors know nothing about this.
good luck.
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[ 15. August 2008, 12:34 PM: Message edited by: Keebler ]
Posted by Keebler (Member # 12673) on :
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PORPHYRIA LINKS
[ in addition to the ones in the first post by ArtistDi - those are excellent ]
BTW, a little organic carrot juice can be a very good thing to lower porphyrins. Greens powders, too, contain beta carotene.
In acute attacks, emergency medical care can be life-saving.
Porphyria can be fatal. But, it can also be managed and attacks (hopefully) prevented.
Glucose can help to prevent that - sometimes, though, it must be administered by IV to be life-saving. Heme products, too, are used for emergency IV's.
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[ 15. August 2008, 12:36 PM: Message edited by: Keebler ]
Posted by Keebler (Member # 12673) on :
- through PubMed:
Indian J Pathol Microbiol. 2008 Jan-Mar;51(1):105-7.
Evaluation of iron status: Zinc protoporphyrin vis-a-vis bone marrow iron stores.
Das S, Philip KJ.
Department Pathology, Christian Medical College, Ludhiana, India.
Zinc protoporphyrin (ZPP) in the red cells is an indicator of iron status in the bone marrow (BM) and can be easily measured by Protofluor-Z Hematofluorometer from Helena Laboratories.
It is well known that bone marrow iron is a gold standard for the diagnosis of iron deficiency anemia (IDA) even in the pre-latent phase.
Hence, it was considered pertinent to evaluate the diagnostic utility of ZPP in comparison with bone marrow iron stores. 107 random BM were selected over a period of 2(1/2) years; in each case, RBC indices where recorded along with ZPP and Perls' Prussian blue reaction for BM iron stores. The specificity and sensitivity were found to be 77.8% and sensitivity 69.8%, respectively.
However, the sensitivity increased up to 96.2% when Hb, RBC indices and ZPP were considered for the diagnosis of IDA.
Pregnenolone is a steroid hormone involved in the steroidogenesis of progesterone, mineralocorticoids, glucocorticoids, androgens, and estrogens. As such it is a prohormone.
Pregnenolone (Wikipedia)
Since pregnenolone, progesterone, and DHEA are all biosynthesized from cholesterol by p450 iron-requiring enzymes, the failure of this enzyme system due to an iron metabolizing problem caused by hyperimmunity can lead to low levels of these neuro-hormones.
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Posted by Keebler (Member # 12673) on :
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This really helps me. Whether this would be good for everyone with any type of genetic porphryia or secondary porphryia - I can't say.
But, when I take Schizandra, I have far fewer seizures and less brain-fog.
* Male mice that received diets containing 5% schisandra berries exhibited a threefold increase in the important liver cytochrome P-450 antioxidanti system (Hendrich et al., 1983).
Equally important is the enhancing effect of schisandra on the status of liver mitochondria in rats (Ip et al., 1998).