my heightened interest (?borderline obsession) about cell health is becoming clear
I am very elevated Pyrrole
explains lots of things in the past few years;
- why I am always zinc deficient
- magnesium deficiency
- B6 issues linked to histamine / nervous system
Thankfully, via my low inflammation diet, and focus on nutrients/minerals etc I have managed to keep the worst of the symptoms kinda tamed. It feels like DeJaVue of 4.5 years ago when I got my MC diagnosis and so many symptoms were explained, and some reassurance that there is a scientific reason for issues.
Pyroluria or Pyrrole Disorder
Pyroluria is also known as Pyrrole Disorder, Pyrroluria, Kryptopyrroluria (KPU) or more precisely hemopyrrollactamuria (HPU). Pyrrole Disorder, is a genetic chemical imbalance involving an abnormality in hemoglobin synthesis. Suffers of this condition produce too much of a byproduct of hemoglobin synthesis called hydroxyhemopyrrolin-2-one (HPL) and hydroxy-2,3-Dimethylpyrrolidin-5-on, also known as Pyrroles.
HPL binds to or inhibits the nutrients; Zinc, Vitamin B6, Biotin and the Omega 6 Fat GLA from reaching their targets within your body. This effectively renders these nutrients unavailable for their many important physiological functions in the body such as co-factors for enzymes in metabolism. These essential nutrients when bound to HPL are removed from the bloodstream and excreted into the urine as pyrroles.
Another piece to the puzzle - Pyrrole Pyroluria
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Another piece to the puzzle - Pyrrole Pyroluria
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Wow, did you figure that one out on your own? I'm very intrigued by the various "lack of enzymes" hypotheses for autoimmune diseases. Interference with metabolism and nutrient absorption is a big problem.
1987 Mononucleosis (EBV)
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
zizzle,
it was urine test via functional lab,
i was going to ask my gp for the referral, when the nutritionist said she can request it, we did it ( same time as when we did MTHFR testing)
my dear friend, who is naturopath was diagnosed in early March 2014, she then had her two children tested, and her daughter was in the strong range
Pyrrole testing, MTHFR testing thus far is not widely accepted by the medical fraternity here in Aus, albeit all the guru type immunologists are testing for it. (Online articles state that pyrrole is active in 10% of population)
My friend living in large capital city, her immunologist gets people to go to the lab, the result is known within 5 minutes. He is able to order the test free via the govt Medicare system.
My sister goes to a guru immunologist, and it is one of the first things he tests for. He has a 5 month waiting list, first appointment is about $400 out of pocket! Plus test costs.
I was really chuffed to find Ruth the nutritionist, no waiting list, $60 out of pocket for the appointment, and the test cost me $110.
So far as treatment, my friend is doing specific compound ordered by her doctor.
It has been a tough 3 months health wise for her, her body is struggling with the 'change over' most likely from the heavy metals getting booted out of her blood.
She was run down at the time, had given up part time work 5 months before that due to fatigue and pain issues.
The magnesium powder I had just transferred to has the b6 in the form that I need to be taking. We are investigating MC safe approach for the other stuff
We have blood test serum level for the zinc, it's not deficient but no where near where it should be.
We are also pondering that whilst I am still not working, and I am much improved gut wise and kidney wise thanks to the mag/Vit C/zinc/coQ10 protocol, if we do a bit of a heavy metal type detox via supplements and acupuncture etc, to improve the blood cells before we add the mix to fix the Pyrrole. Aware that it won't be pleasant process as we drag the nasties out of my body.
As per the other post about magnesium, more and more it is showing that cell health is a big big factor with these types of conditions, the medical system doesn't have the right testing to get the info we need, interesting that functional medicine labs have created the various tests. (e.g. entorlab)
With the test result as strongly positive, we are going to see what tests my gp can order via the govt Medicare system that will help us to narrow down how best to approach, then look at the functional labs and what I can afford.
it was urine test via functional lab,
i was going to ask my gp for the referral, when the nutritionist said she can request it, we did it ( same time as when we did MTHFR testing)
my dear friend, who is naturopath was diagnosed in early March 2014, she then had her two children tested, and her daughter was in the strong range
Pyrrole testing, MTHFR testing thus far is not widely accepted by the medical fraternity here in Aus, albeit all the guru type immunologists are testing for it. (Online articles state that pyrrole is active in 10% of population)
My friend living in large capital city, her immunologist gets people to go to the lab, the result is known within 5 minutes. He is able to order the test free via the govt Medicare system.
My sister goes to a guru immunologist, and it is one of the first things he tests for. He has a 5 month waiting list, first appointment is about $400 out of pocket! Plus test costs.
I was really chuffed to find Ruth the nutritionist, no waiting list, $60 out of pocket for the appointment, and the test cost me $110.
So far as treatment, my friend is doing specific compound ordered by her doctor.
It has been a tough 3 months health wise for her, her body is struggling with the 'change over' most likely from the heavy metals getting booted out of her blood.
She was run down at the time, had given up part time work 5 months before that due to fatigue and pain issues.
The magnesium powder I had just transferred to has the b6 in the form that I need to be taking. We are investigating MC safe approach for the other stuff
We have blood test serum level for the zinc, it's not deficient but no where near where it should be.
We are also pondering that whilst I am still not working, and I am much improved gut wise and kidney wise thanks to the mag/Vit C/zinc/coQ10 protocol, if we do a bit of a heavy metal type detox via supplements and acupuncture etc, to improve the blood cells before we add the mix to fix the Pyrrole. Aware that it won't be pleasant process as we drag the nasties out of my body.
As per the other post about magnesium, more and more it is showing that cell health is a big big factor with these types of conditions, the medical system doesn't have the right testing to get the info we need, interesting that functional medicine labs have created the various tests. (e.g. entorlab)
With the test result as strongly positive, we are going to see what tests my gp can order via the govt Medicare system that will help us to narrow down how best to approach, then look at the functional labs and what I can afford.
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
It's great to see that you're doing so much better these days. But if you are doing well, why rock the boat? I don't understand why virtually everyone who goes to see an alternative practitioner becomes convinced that they desperately need to be "detoxed". Unless we have spent most of our life living on top of a toxic waste dump site, none of us should need to be "detoxed". That's why we have a liver, and if it is functional, it takes care of the detoxing. If it isn't functional, we soon die, so it's relatively easy to tell whether or not it's functioning correctly. This is just my opinion, of course, but it bothers me that the idea that virtually everyone needs to be detoxed is promoted so heavily by alternative practitioners. In far too many cases, the only one who benefits from the treatment is the practitioner.Gabes wrote:We are also pondering that whilst I am still not working, and I am much improved gut wise and kidney wise thanks to the mag/Vit C/zinc/coQ10 protocol, if we do a bit of a heavy metal type detox via supplements and acupuncture etc, to improve the blood cells before we add the mix to fix the Pyrrole. Aware that it won't be pleasant process as we drag the nasties out of my body.
Gabes, please give some very careful thought to this before you decide to take a chance on jeopardizing your improved health. As you are surely well aware, gambles such as this have proved to be the undoing of many people who were happily enjoying the benefits of remission. There's certainly no harm in acupuncture — to the contrary, it's usually helpful. But please be careful with those "detoxing" supplements. Remember that the old saying that "One man's poison is another man's medicine", also tends to be true in reverse.
Hugs,
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Tex,
totally agree, exactly why we are pondering the pro's and con's of all options.
It was me that proposed the idea, not my practitioner.
Improvement and correction will be limited while ever there is high levels of heavy metals.
Clearing heavy metals has been an issue for me for the past two years or so (hence why we thought I had MTHFR mutation) My friend is in the middle of the gradual approach, and her Pyrrole result level was half of what mine is.
A key part of why I proposed the hell and back approach is, if my gp is part of the collaboration and monitoring results, I can get a medical certificate for the duration of the worst part of the process, and have that period of time covered by the income insurance, which will give me the funding to do it.
I have hesitations about starting a new job and be going through the gradual approach at the same time.
totally agree, exactly why we are pondering the pro's and con's of all options.
It was me that proposed the idea, not my practitioner.
Improvement and correction will be limited while ever there is high levels of heavy metals.
Clearing heavy metals has been an issue for me for the past two years or so (hence why we thought I had MTHFR mutation) My friend is in the middle of the gradual approach, and her Pyrrole result level was half of what mine is.
A key part of why I proposed the hell and back approach is, if my gp is part of the collaboration and monitoring results, I can get a medical certificate for the duration of the worst part of the process, and have that period of time covered by the income insurance, which will give me the funding to do it.
I have hesitations about starting a new job and be going through the gradual approach at the same time.
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Jon,
Before the Pyrrole results fixing heavy metal toxicity was enhancing current protocol and keep correcting cell deficiencies
Magnesium, Vit c, zinc, digest enzyme, sb boulardi (minimised inflammation, support adrenals, good digestion process, reduce medications)
Post Pyrrole results; fix magnesium deficiency is a priority, investigate a safe omega 6 product, use acupuncture to help clear heavy metal,
the magnesium powder i started 4 weeks ago, has P5P, and other supps that are used for pyrrole correction/metal clearing.
we agreed that whilst i was tolerating that mag/supp blend really well, we wont make any changes for 8 weeks or so, 12 weeks of high magnesium supplementation should start to correct the deficiency,
Before the Pyrrole results fixing heavy metal toxicity was enhancing current protocol and keep correcting cell deficiencies
Magnesium, Vit c, zinc, digest enzyme, sb boulardi (minimised inflammation, support adrenals, good digestion process, reduce medications)
Post Pyrrole results; fix magnesium deficiency is a priority, investigate a safe omega 6 product, use acupuncture to help clear heavy metal,
the magnesium powder i started 4 weeks ago, has P5P, and other supps that are used for pyrrole correction/metal clearing.
we agreed that whilst i was tolerating that mag/supp blend really well, we wont make any changes for 8 weeks or so, 12 weeks of high magnesium supplementation should start to correct the deficiency,
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama