Ann
I cant find the discussion where you mentioned your knowledge via the dissertation on amino acids/methylation - probably best i start a new one anyway!!
(i have had limited computer time this past fortnight and have contributed where i can)
I am very keen to discuss some aspects with you when you have some time: -
Q1. do you know about/have any info on methylation issues not linked to MTHFR gene mutations?
i tested negative for 677 1298, albeit there are methylation issues and other health issues not necessarily in line with my Pyrrole issues
Q2. I might have posted about this prior to you joining the group. in your research did you come across much information about Metallothionein? (MT for short)
This is linked to amino acids/ leaky gut.
anything else that you think might be of note, feel free to include.
if you need any background info let me know.
thanks in advance
Gabes
xo
Attn: Ann W
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
-
Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Attn: Ann W
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Hi Gabes:
My doctoral dissertation involved measuring serum amino acid levels in the blood contained within the methylation cycle, the urea cycle, the transulfuration cycle, and the neurotransmitters etc. and using that information to determine genetic defects in enzymes. My doctoral studies were concentrated in nutritional biochemistry. Since that time I have taken a number of Continuing Education Courses specifically on the many genetic defects within the methylation cycle and others.....not just MTHFR.
Metallothioneins are cysteine-containing proteins in the cell (goli apparatus) that are involved in the regulation of zinc and copper, and can bind to heavy metals as well as selenium. There are a number of amino acids (including cysteine which is need to make glutathione) in the methylation cycle that are needed to make sure metalothioneins are functioning properly as antioxidants. Zinc and copper in the right ratios are also essential to metalothioneins working. Heavy metal toxicity can inhibit them.
This is just one example of why I keep insisting that those on restricted diets make sure they are getting enough nutrients. If not from food than at least from a multi-vitamin/mineral supplement. The gut cannot heal without them. Also, as I stated in an earlier post, one does not have to have genetic defects for the methylation cycle to be inpaired. Nutritional deficiencies in any or all the nutrients needed as co-enzymes in this or any other biochemical pathway can keep cells from functioning normally. Genetics is not destiny. Deficiencies often cause more damage over time then most SNP's (genetic variations).
Do you have a specific question about metallothioneins? If you were genetically tested, do you have your results? What exactly do you mean by your pyrrole issues? Would be glad to discuss with more details.
Dr. Ann
My doctoral dissertation involved measuring serum amino acid levels in the blood contained within the methylation cycle, the urea cycle, the transulfuration cycle, and the neurotransmitters etc. and using that information to determine genetic defects in enzymes. My doctoral studies were concentrated in nutritional biochemistry. Since that time I have taken a number of Continuing Education Courses specifically on the many genetic defects within the methylation cycle and others.....not just MTHFR.
Metallothioneins are cysteine-containing proteins in the cell (goli apparatus) that are involved in the regulation of zinc and copper, and can bind to heavy metals as well as selenium. There are a number of amino acids (including cysteine which is need to make glutathione) in the methylation cycle that are needed to make sure metalothioneins are functioning properly as antioxidants. Zinc and copper in the right ratios are also essential to metalothioneins working. Heavy metal toxicity can inhibit them.
This is just one example of why I keep insisting that those on restricted diets make sure they are getting enough nutrients. If not from food than at least from a multi-vitamin/mineral supplement. The gut cannot heal without them. Also, as I stated in an earlier post, one does not have to have genetic defects for the methylation cycle to be inpaired. Nutritional deficiencies in any or all the nutrients needed as co-enzymes in this or any other biochemical pathway can keep cells from functioning normally. Genetics is not destiny. Deficiencies often cause more damage over time then most SNP's (genetic variations).
Do you have a specific question about metallothioneins? If you were genetically tested, do you have your results? What exactly do you mean by your pyrrole issues? Would be glad to discuss with more details.
Dr. Ann
-
Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Thanks for your time Dr Ann..
Pyrrole is a genetic mutation
this link provides the best summary; http://www.vitalityandwellness.com.au/pyroluria
my result for Kryptopyrrole was very high...
Given the issues that I have, namely with toxin/heavy metal levels being high, once MC started I am sure metallothioneins was part of my issues in the past 5-7 years. recent tests proved that the zinc and copper were way out of ratio and I suspect it has been like that for a while.
thankfully the daily intake of home made bone broth boosted the amino acids which I think helped me alot (and protected me from getting any worse)
some recent research reiterates that leaky gut, build up of toxins/metals in the brain, deficiencies due to ongoing inflammation/symptoms is enough to cause methylation issues.
As i tested negative to 677 1298, I was wondering if you have any info that would explain methylation issues, and how I can figure them out and in figuring them out, resolve them!
I struggled to find a doctor who was 'Pyrrole knowledgeable', I found one, saw her twice and then she moved on, her replacement is struggling with my casemix of issues and struggling as to how we can figure out root causes. There are some tests that would maybe give some pieces to the puzzle, albeit this testing would be expensive (over $2k) I havent worked for 8 months and my current supplement regime to fix deficiencies/imbalances is costing me about $350 per month. so it will be a while yet before I have the money for the testing. In the meantime I have been spending my spare time researching to see if I can narrow down what pieces of the puzzle i have to find.
Pyrrole is a genetic mutation
this link provides the best summary; http://www.vitalityandwellness.com.au/pyroluria
my result for Kryptopyrrole was very high...
Given the issues that I have, namely with toxin/heavy metal levels being high, once MC started I am sure metallothioneins was part of my issues in the past 5-7 years. recent tests proved that the zinc and copper were way out of ratio and I suspect it has been like that for a while.
thankfully the daily intake of home made bone broth boosted the amino acids which I think helped me alot (and protected me from getting any worse)
some recent research reiterates that leaky gut, build up of toxins/metals in the brain, deficiencies due to ongoing inflammation/symptoms is enough to cause methylation issues.
As i tested negative to 677 1298, I was wondering if you have any info that would explain methylation issues, and how I can figure them out and in figuring them out, resolve them!
I struggled to find a doctor who was 'Pyrrole knowledgeable', I found one, saw her twice and then she moved on, her replacement is struggling with my casemix of issues and struggling as to how we can figure out root causes. There are some tests that would maybe give some pieces to the puzzle, albeit this testing would be expensive (over $2k) I havent worked for 8 months and my current supplement regime to fix deficiencies/imbalances is costing me about $350 per month. so it will be a while yet before I have the money for the testing. In the meantime I have been spending my spare time researching to see if I can narrow down what pieces of the puzzle i have to find.
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Gabes:
I know what pyrrole disorder is. It is a defect in hemoglobin catatbolism that results in excess hemepyrroles in the urine. How were you diagnosed? What exactly is your supplement regimen? How much vitamin B6 do you take and how much zinc? What forms? It is important for the methylation cycle to work if urine hemepyrroles are to be reduced. Have you had your homocysteine levels checked?
Dr. Ann
I know what pyrrole disorder is. It is a defect in hemoglobin catatbolism that results in excess hemepyrroles in the urine. How were you diagnosed? What exactly is your supplement regimen? How much vitamin B6 do you take and how much zinc? What forms? It is important for the methylation cycle to work if urine hemepyrroles are to be reduced. Have you had your homocysteine levels checked?
Dr. Ann
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Dr. Ann
i was diagnosed by the Kryptopyrrole urine test - my level was 76.
Blood test around the same time, zinc was low and copper was high
(have had various issues borderline co-factor issues over the past 2 years.)
Current Supplement Regime
(provided totals, the intake is split into 3 intakes over the day)
- Zinc 100-120mg elemental zinc per day
- Magnesium min of 1200mg per day
- B6 150mg per day
- P5P 125mg per day
- Vit C 1500mg-2000mg per day
- Vit E (soy free) 1200iu per day
- Vit D3 2000 iu per day
- Chromium 200ug per day
- Molybdenum 300 ug per day
- CoQ10 300mg per day
- meth B12 about 5ml per week. which is 6000mcg methylcobalamin
we have tried to increase the P5P and B6, but it was causing too much nausea.
it has taken me 4 weeks to get the Meth B12 up to 5ml per week as it too was causing really bad nausea.
I was already doing the Vit D3 and CoQ10 and low doses of zinc
In April 2014, I started high doses of Mag, Vit C, Chromium and 50mg of zinc per day
In May 2014 increased the Zinc
June 2014 I implemented the rest over the course of 2 months.
Dont believe i have had the homocysteine levels checked. will put this on the wish list to discuss with my doctor - Am very thankful for any suggestions for tests that will provide good info to assist the puzzle.
Recently had tests to follow up the zinc and copper levels, iodine levels, and we are trying to get the T3 T4 etc regardless of my TSH being in range (not easy in the Australian medical system if your TSH is in range) I will get the results tomorrow.
If it helps, I have an excel spreadsheet of ALL my blood/urine results since 2008.
thanks again for your time and knowledge.
i was diagnosed by the Kryptopyrrole urine test - my level was 76.
Blood test around the same time, zinc was low and copper was high
(have had various issues borderline co-factor issues over the past 2 years.)
Current Supplement Regime
(provided totals, the intake is split into 3 intakes over the day)
- Zinc 100-120mg elemental zinc per day
- Magnesium min of 1200mg per day
- B6 150mg per day
- P5P 125mg per day
- Vit C 1500mg-2000mg per day
- Vit E (soy free) 1200iu per day
- Vit D3 2000 iu per day
- Chromium 200ug per day
- Molybdenum 300 ug per day
- CoQ10 300mg per day
- meth B12 about 5ml per week. which is 6000mcg methylcobalamin
we have tried to increase the P5P and B6, but it was causing too much nausea.
it has taken me 4 weeks to get the Meth B12 up to 5ml per week as it too was causing really bad nausea.
I was already doing the Vit D3 and CoQ10 and low doses of zinc
In April 2014, I started high doses of Mag, Vit C, Chromium and 50mg of zinc per day
In May 2014 increased the Zinc
June 2014 I implemented the rest over the course of 2 months.
Dont believe i have had the homocysteine levels checked. will put this on the wish list to discuss with my doctor - Am very thankful for any suggestions for tests that will provide good info to assist the puzzle.
Recently had tests to follow up the zinc and copper levels, iodine levels, and we are trying to get the T3 T4 etc regardless of my TSH being in range (not easy in the Australian medical system if your TSH is in range) I will get the results tomorrow.
If it helps, I have an excel spreadsheet of ALL my blood/urine results since 2008.
thanks again for your time and knowledge.
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Dr. Ann,
Thanks for the suggestion. I have thought a good multi with each meal would be better than dealing with several different ones and the risk of reaction. I also noted this supplement has the active forms of the vitamins and will no doubt be better for our use.
http://www.amazon.com/Doctors-Best-Mult ... ultiple+90
Thanks for the suggestion. I have thought a good multi with each meal would be better than dealing with several different ones and the risk of reaction. I also noted this supplement has the active forms of the vitamins and will no doubt be better for our use.
http://www.amazon.com/Doctors-Best-Mult ... ultiple+90
Theresa
MC and UC 2014
in remission since June 1, 2014
We must all suffer one of two things: the pain of discipline or the pain of regret. ~Jim Rohn
MC and UC 2014
in remission since June 1, 2014
We must all suffer one of two things: the pain of discipline or the pain of regret. ~Jim Rohn
Theresa & Linda, you are welcome!
Gabes:
Please excuse all my questions, but I am trying to put all the information you posted together.
The supplement regimen, did your doctor prescribe it, or is it a combo of some you take on your own and some prescribed?
If you do not have the MTHFR defect why such high doses of methyl B12? (I understand the reasoning for the extra P-5-P and zinc.)
If all these supplements are being prescribed by your doctor, I am reluctant to suggest otherwise without knowing your entire medical history. The homocysteine levels are a quick way of checking on how the methylation cycle is working since folate, B6, and B12 together are required to recycle or detox homocysteine in the methionine part of the cycle. Zinc is also required as a cofactor, as is magnesium.
I would want more genetic testing done to determine if other defects are contributing to your pyrrole disorder. Have you considered genetic testing via 23andme? It uses saliva and costs only $99 (in US dollars). You would need someone to help you interpret the results.
www.23andme.com
Without additional genetic testing my approach would be a bit different. I would use a copper-free multivitamin mineral, with additional P-5-P and zinc and monitor your urine pyrrole's. I would measure serum zinc and copper levels as well as intracellular erythrocyte B6 levels along the way and supplement accordingly. I would test for excess free radical production and if needed supplement with N-A-C and other antioxidants if indicated. Extra vitamin D3 is always on my radar and Tex has done a great job of showing how supplemenation is almost always needed in autoimmune diseases. Other supplementation would be determined by dietary deficiencies, symptoms etc.
Dr. Ann
Gabes:
Please excuse all my questions, but I am trying to put all the information you posted together.
The supplement regimen, did your doctor prescribe it, or is it a combo of some you take on your own and some prescribed?
If you do not have the MTHFR defect why such high doses of methyl B12? (I understand the reasoning for the extra P-5-P and zinc.)
If all these supplements are being prescribed by your doctor, I am reluctant to suggest otherwise without knowing your entire medical history. The homocysteine levels are a quick way of checking on how the methylation cycle is working since folate, B6, and B12 together are required to recycle or detox homocysteine in the methionine part of the cycle. Zinc is also required as a cofactor, as is magnesium.
I would want more genetic testing done to determine if other defects are contributing to your pyrrole disorder. Have you considered genetic testing via 23andme? It uses saliva and costs only $99 (in US dollars). You would need someone to help you interpret the results.
www.23andme.com
Without additional genetic testing my approach would be a bit different. I would use a copper-free multivitamin mineral, with additional P-5-P and zinc and monitor your urine pyrrole's. I would measure serum zinc and copper levels as well as intracellular erythrocyte B6 levels along the way and supplement accordingly. I would test for excess free radical production and if needed supplement with N-A-C and other antioxidants if indicated. Extra vitamin D3 is always on my radar and Tex has done a great job of showing how supplemenation is almost always needed in autoimmune diseases. Other supplementation would be determined by dietary deficiencies, symptoms etc.
Dr. Ann
Linda and Theresa:
After things (gut wise) have settled down, I often add in supplemental calcium, magnesium, and extra vitamin D3 to that multiple. Most MC patients avoid whole grains, nuts & seeds, and dairy. These are the best dietary sources of magnesium and calcium and thus these nutrients are often deficient. 500 mg of calcium and 500 mg of magnesium daily is usually sufficient. NEVER supplement with calcium alone. It must be balanced with magnesium. Calcium citrate is easily absorbed and affordable. Magnesium citrate is also well absorbed and at 500 mg should not cause diarrhea. If it does, than one can switch to magnesium taurate which can also calm an irritated gut. The extra vitamin D3 is self explanatory.
Dr. Ann
After things (gut wise) have settled down, I often add in supplemental calcium, magnesium, and extra vitamin D3 to that multiple. Most MC patients avoid whole grains, nuts & seeds, and dairy. These are the best dietary sources of magnesium and calcium and thus these nutrients are often deficient. 500 mg of calcium and 500 mg of magnesium daily is usually sufficient. NEVER supplement with calcium alone. It must be balanced with magnesium. Calcium citrate is easily absorbed and affordable. Magnesium citrate is also well absorbed and at 500 mg should not cause diarrhea. If it does, than one can switch to magnesium taurate which can also calm an irritated gut. The extra vitamin D3 is self explanatory.
Dr. Ann
-
Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Ann,
dont mind the questions at all, i am so very thankful for your time and help!
the supplement regimen is a combo put together by me, naturopath (best friend known her for 15 years she also has pyrrole but has different issues due to it), nutritionist and Doctor based on my combo of issues
Part of the reason for my questions to you was to determine 'best value' further testing. the tests here in Aus were going to cost thousands. If there is an affordable test that will provide great information, I am willing to do it.
we have discussed doing NAC - we thought we would get the zinc/copper and other toxins sorted first and then in ?6 months tweak the protocol. I have always done high Vit D3 supplementation, since upping the magnesium and now spending 2 hours in the sun wearing lanolin most days my Vit D3 levels are pretty good, I am happy with the 2000iu per day
Medical history
- digestion issues since birth
(mother had measles during pregnancy, blood poisoning during pregnancy and induced labour)
- childhood had german measles, tonsillectomy, whooping cough, asthma bronchitis, glandular fever, ear infections,
- polycystic ovarian syndrome
- 3 x surgery for bowel obstructions (no ligaments holding large intestine in place)
- niggling issues for 3 years prior to MC Dx (IBS, eyes, fatigue etc)
- Depression/anxiety
- MC Dx in 2009
since 2009 have also been diagnosed with
- hyper tension/tachycardia,
- hiatus hernia,
- various issues with molers/gums,
- renal impairment (unknown cause),
- lichen sclerosis,
- fibromyalgia,
- anal fissures,
my reading and understanding of pyrrole explains majority of the issues since the MC kicked in - inflammation, dodgy cells not able to cope with toxins/heavy metals.
digestion is great since doing the SB Boullardi, and balancing histamine inflammation with Mag/Vit C and Zinc
the Fibro, and sclerosis have settled down since doing the Mag/Vit C/high Zinc
molers and gums are great since removing troublesome teeth and doing CoQ10 lingual and high zinc
metabolism / energy levels have improved since doing the toxin clearing Vit C, Vit E, Moly etc
as you mentioned above about the high dose of methyl b12, alot of my symptoms/issues correlate with MTHFR type issues so we figured lets do it, then again I am keen to do affordable testing to see if this is the right thing for me.
dont mind the questions at all, i am so very thankful for your time and help!
the supplement regimen is a combo put together by me, naturopath (best friend known her for 15 years she also has pyrrole but has different issues due to it), nutritionist and Doctor based on my combo of issues
Part of the reason for my questions to you was to determine 'best value' further testing. the tests here in Aus were going to cost thousands. If there is an affordable test that will provide great information, I am willing to do it.
we have discussed doing NAC - we thought we would get the zinc/copper and other toxins sorted first and then in ?6 months tweak the protocol. I have always done high Vit D3 supplementation, since upping the magnesium and now spending 2 hours in the sun wearing lanolin most days my Vit D3 levels are pretty good, I am happy with the 2000iu per day
Medical history
- digestion issues since birth
(mother had measles during pregnancy, blood poisoning during pregnancy and induced labour)
- childhood had german measles, tonsillectomy, whooping cough, asthma bronchitis, glandular fever, ear infections,
- polycystic ovarian syndrome
- 3 x surgery for bowel obstructions (no ligaments holding large intestine in place)
- niggling issues for 3 years prior to MC Dx (IBS, eyes, fatigue etc)
- Depression/anxiety
- MC Dx in 2009
since 2009 have also been diagnosed with
- hyper tension/tachycardia,
- hiatus hernia,
- various issues with molers/gums,
- renal impairment (unknown cause),
- lichen sclerosis,
- fibromyalgia,
- anal fissures,
my reading and understanding of pyrrole explains majority of the issues since the MC kicked in - inflammation, dodgy cells not able to cope with toxins/heavy metals.
digestion is great since doing the SB Boullardi, and balancing histamine inflammation with Mag/Vit C and Zinc
the Fibro, and sclerosis have settled down since doing the Mag/Vit C/high Zinc
molers and gums are great since removing troublesome teeth and doing CoQ10 lingual and high zinc
metabolism / energy levels have improved since doing the toxin clearing Vit C, Vit E, Moly etc
as you mentioned above about the high dose of methyl b12, alot of my symptoms/issues correlate with MTHFR type issues so we figured lets do it, then again I am keen to do affordable testing to see if this is the right thing for me.
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Gabes:
"3 x surgery for bowel obstructions (no ligaments holding large intestine in place)"
The above may have contributed to your developing MC. It can also contribute to SIBO developing.
You might want to consider the 23andme testing. I am "old school" and believe sometimes "less is more".
Complicated regimens can sometimes complicate the picture. This can make it harder to figure out what is going on.
I hope my comments/suggestions helped.
Dr. Ann
"3 x surgery for bowel obstructions (no ligaments holding large intestine in place)"
The above may have contributed to your developing MC. It can also contribute to SIBO developing.
You might want to consider the 23andme testing. I am "old school" and believe sometimes "less is more".
Complicated regimens can sometimes complicate the picture. This can make it harder to figure out what is going on.
I hope my comments/suggestions helped.
Dr. Ann
-
Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Genetics, family history, bucket loads of doxycycline when I travelled to Papua New Guinea, 3 year stressful complicated divorce, bowel defects amongst other things contributed to me getting MC!
no Sibo - have done that testing June 2014
no parasites or bacteria testing done May 2014
Will do the the 23andme testing - heartfelt thanks for your time and suggestions - it has helped alot.
(there is also some relief / reassurance that comes with talking to someone who 'gets it'!!)
no Sibo - have done that testing June 2014
no parasites or bacteria testing done May 2014
Will do the the 23andme testing - heartfelt thanks for your time and suggestions - it has helped alot.
(there is also some relief / reassurance that comes with talking to someone who 'gets it'!!)
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Gabes, though 23 and Me can no longer interpret your results I used www.promethease.com (was $5) or www.geneticgenic.org.