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NutrEval help pls! (originally "Functional B12 deficiency")

Messages
29
Hello, I am new here.

Wondering if anyone can shed possible reasons for a high deficiency in B12 in the cells per NutrEval results, while the serum levels were off the chart high while taking methyl B12? I was instructed to stop taking the B12 and a couple years later, my serum B 12 is much lower but still in range.

I thought I needed a different form of B12, such as adeno or hydroxy. However, I had an online consult with a practioner who seems to understand NutrEval results and she said I needed Vit E in the form of tocotrienols to get allow the B12 to get into my cells. (I am compound heterozygous for MTHFR, but the practitioner didn't think it was expressing itself as some markers for folate, I believe, were ok.)

I read about taking lithium to get B12 into the cells, I do happen to be very low in lithium.

Does anyone have any thoughts or experience? I wanted to hopefully get some feedback before I take the plunge and buy all the supplements she suggested (most importantly, per her advice, is niacin and then biotin.

Thank you!
 
Messages
366
I would actually look at other B12 forms. if your body only has a lot of methylB12 and doesn't break it down anymore, he might be missing basic cobalamin to produce adenosylB12. I don't know if this could cause methylcobalamin to not be transported into the cells anymore though. But taking a lot of methylB12 and developing a deficiency in cobalamin or adenosylB12 is a common issue.

I have good experience with hydroxocobalamin, I take it sublingually or your doctor can give you hydroxoB12 shots.
 

charles shepherd

Senior Member
Messages
2,239
We have a new MEA information leaflet that covers all aspects of vitamin B12 and ME/CFS - causes of B12 deficiency, symptoms, blood tests, treatment, research into the possible link to ME/CFS - that you might find helpful:

COULD VITAMIN B12 BE A SAFE AND EFFECTIVE FORM OF TREATMENT IN ME/CFS?

New leaflet from the ME Association in which Dr Charles Shepherd explores the evidence base.

Now available for in the MEA website literature shop:
http://www.meassociation.org.uk/sho...12-be-a-safe-and-effective-form-of-treatment/

Summary of the key points in this new MEA leaflet:

Although some people with ME/CFS report that vitamin B12 injections have been helpful, there is no robust scientific evidence to currently demonstrate that vitamin B12 deficiency occurs in ME/CFS

And there are no results from clinical trials to indicate that vitamin B12 injections are a safe and effective form of treatment for ME/CFS.

If people are going to take vitamin B12 it is very important to make sure that pernicious anaemia (PA) has first been excluded. PA is an autoimmune condition that results in decreased absorption of B12 from the gut - hence the need for injections.

Excluding PA is important because PA can cause very serious neurological complications (ie sub acute combined degeneration of the spinal cord:https://medlineplus.gov/ency/article/000723.htm) if not properly treated.

The final point is that the MEA Ramsay Research Fund is keen to investigate the possible role of vitamin B12 in ME/CFS

So we have had some preliminary discussions regarding a small clinical trial involving B12 therapy in ME/CFS.

Also worth noting that vitamin supplements are not recommended in the NICE guideline on ME/CFS. So most doctors are going to be reluctant to prescribe vitamin B12 injections to people with ME/CFS - unless there are sound reasons for doing so

What NICE regard as inappropriate prescribing of vitamin B12 can also lead to a GMC investigation:

http://www.sunderlandecho.com/.../doctor-banned-from..
.


Dr Charles Shepherd
Hon Medical Adviser, MEA
 

charles shepherd

Senior Member
Messages
2,239
Two relevant sections from the MEA information leaflet on vitamin B12 and ME/CFS:

WHAT CAUSES VITAMIN B12 DEFICIENCY?


There are several ways in which people can develop vitamin B12 deficiency:


First is a very important autoimmune disease called pernicious anaemia (PA). An autoimmune disease is where the body’s immune system produces harmful antibodies (= autoantibodies) against its own tissues, and there is some evidence to indicate that ME/CFS has an autoimmune component. In the case of PA, the immune system produces antibodies against healthy cells in the stomach where a molecule called intrinsic factor, which helps vitamin B12 to be absorbed in the small intestines, is produced.


Pernicious anaemia is the commonest cause of vitamin B12 deficiency in the UK. It is more common in women around the age of 60, especially when they have other autoimmune conditions.


Other causes include:



· Diet As food is the main source of vitamin B12, poor or restrictive diets – especially vegan diets lacking in meat, eggs and dairy produce - can cause vitamin B12 deficiency.


· Intestinal diseases such as Crohn’s disease and coeliac disease – which can cause a decrease in absorption of vitamin B12 from the small intestine.


· Stomach surgery - where there is a loss of intrinsic factor producing cells. Reduced stomach acid production, which is needed to separate B12 from protein in food.


· Drugs – including anticonvulsants, proton pump inhibitors for indigestion and metformin for type 2 diabetes This is because some prescription-only drugs affect the way in which the body absorbs vitamin B12. Oestrogen containing oral contraceptives can reduce vitamin B12 levels – as can pregnancy.


· Functional vitamin B12 deficiency - where there is a problem with proteins that transport vitamin B12 between cells. This can also cause neurological complications.


Stores of vitamin B12 last a long time – several years – so it can take a long time for symptoms to appear and become obvious. It is also worth noting that vitamin B12 deficiency becomes more common as people grow older.


HOW IS VITAMIN B12 DEFICIENCY DIAGNOSED?


Vitamin B12 deficiency results in the bone marrow producing abnormal blood cells that are larger than normal – megaloblastic cells – and do not work as efficiently as normal red cells. The resulting anaemia is called a macrocytic anaemia.


A vitamin B12 blood test measures the total amount of vitamin B12 – active and inactive - in the serum (the liquid part of the blood). If a significant amount of vitamin B12 is inactive in the blood, this can cause a misleadingly normal result. So there is a weakness with the current blood test as it is not measuring the actual level of active B12 in the cells in the body. Second line tests, where use and availability are limited, include plasma methylmalomic acid and plasma homocysteine. Testing for intrinsic factor antibody can help to confirm the diagnosis.


The level of folate is also usually checked at the same time for the possibility of co-existent folate deficiency anaemia.

Dr Charles Shepherd
Hon Medical Adviser, MEA
 
Messages
1,478
A vitamin B12 blood test measures the total amount of vitamin B12 – active and inactive - in the serum (the liquid part of the blood). If a significant amount of vitamin B12 is inactive in the blood, this can cause a misleadingly normal result. So there is a weakness with the current blood test as it is not measuring the actual level of active B12 in the cells in the body. Second line tests, where use and availability are limited, include plasma methylmalomic acid and plasma homocysteine. Testing for intrinsic factor antibody can help to confirm the diagnosis.

It is also worth noting that the intrinsic factor test only has a 50% detection rate so the pernicious anaemia society puts more emphasis on symptoms along with serum results to make a diagnosis.

Basically if you have lowish b12 and or folate and have neurological symptoms (cognition, tingling fingers and toes etc etc) then your GP should put you on injections straight away.

More information can be found at the pernicious anemia society who campaign regularly to improve the education of GPs on this disease.
 

charles shepherd

Senior Member
Messages
2,239
It is also worth noting that the intrinsic factor test only has a 50% detection rate so the pernicious anaemia society puts more emphasis on symptoms along with serum results to make a diagnosis.

Basically if you have lowish b12 and or folate and have neurological symptoms (cognition, tingling fingers and toes etc etc) then your GP should put you on injections straight away.

More information can be found at the pernicious anemia society who campaign regularly to improve the education of GPs on this disease.


Yes, I have contact with the PA society and they provide very good information on all aspects of pernicious anaemia:

https://pernicious-anaemia-society.org/diagnosis/

PA is a serious medical condition and if there is any doubt about the diagnosis in primary care my view is that the patient should be referred for an urgent specialist assessment - because, as you say, proper treatment should be started early to help reduce the risk of serious neurological damage to the spinal cord

CS
 

Abha

Abha
Messages
267
Location
UK
Yes, I have contact with the PA society and they provide very good information on all aspects of pernicious anaemia:

https://pernicious-anaemia-society.org/diagnosis/

PA is a serious medical condition and if there is any doubt about the diagnosis in primary care my view is that the patient should be referred for an urgent specialist assessment - because, as you say, proper treatment should be started early to help reduce the risk of serious neurological damage to the spinal cord

CS
Hi Dr Shepherd,

Yes,I entirely agree with you re PA and B12 deficiency as I have such an illness plus CFS/ME(?)Unfortunately in my experience(well in my 70s now) in Northern Ireland/Britain too GPs/consultants ignore this fact.As recently as 2005/6 I went through the main clinic(Belfast) here where CFS/ME patients were sent and although my B12 reading was only 93 I wasn't investigated for PA then....and as far as I recall two sets of injections were recommended and that was it.

I believe I have had B12 deficiency problems from childhood(probably worsened by gas given by dentist to extract teeth back then).Dr Broda Barnes did good work in that field and Sally Pacholok and her husband Dr Stuart wrote a very good book(for lay person) entitled "Could it be B12"(USA)Eventually around 2007/2008? with continuous brain/gut problems I got to see a gastroenterologist(?) and he finally diagnosed my B12 deficiency....Pernicious Anaemia and autoimmune gastritis.The PA should have been diagnosed years earlier as my mother had such problems(finally diagnosed by a student doctor friend(visiting her) when she was well into her 80s(bent over with osteoporosis too/back disk problems from her nursing days)..My grandmother was wheelchair bound(crippled from arthritis?(said to be?/She died youngish...maybe due to PA?)/but probably B12 problem.Seemingly this B12 deficiency problem travels down the mother's side of the family(can skip generations?)....and the men can have it but are not carriers.I took part in a study some years ago(UK) carried out by Dr Siddarth Banka and team....and I believe some of that information came from him.

B12 deficiency in ME/CFs is an interesting topic and Professor Carl Gerhard Gottfries/Sweden (now retired/in his 90s?)with whom's work I'm sure you are familiar(see youtube....5 very good videos)has excellent thoughts on that and talks about it in his videos(4th one in particular?)His own illness is very similar to mine(I had that Asian flu too in 1957/58?)....It was the worst flu I ever had and those viruses probably still luinger in my system.Professor Gottfries is now advising/working with OMI in California as far as I understand.

My own illness has been further complicated by an organophosphate(malathion )contact(through my work abroad in my 20s/early 30s?)and by hypopituitarism(head injuries since 30s due to an unprovoked assault) but only diagnosed in 2014 after I had figured out what it probably was.i also had to find out about my own parathyroid disease and then get it too recognised by NHS.The NHS has its good points but sadly it has many failures too and those in charge need to learn from patients like myself.That is not being done in NI and although the Ombudsman advised me to go back through the system in 2013 no immunologist/other wants to see me!
 

charles shepherd

Senior Member
Messages
2,239
Are you any nearer to setting up a decent hospital based referral service for ME/CFS patients in NI?

I haven't been over to NI for a bit and my understanding is that there still isn't a good NHS hospital based service with a physician in charge where GPs can refer patients for further help with either diagnosis or management of ME/CFS

Anyway, that is what I currently say to people who contacting the MEA and are wanting a specialist referral in NI

There is, of course, my colleague Dr William Weir, infectious diseases specialist, who makes occasional visits to Belast to see patients in a non NHS capacity

CS
 
Messages
29
Wow wow wow! I was so thrilled and so surprised to wake up and find all this fabulous info!! I can't thank you all enough! I will look through it thoroughly and try to digest it all.

I wanted to ask about my Figlu result and what it means... if it's and my folate levels are truly "normal" or not.
It is creeping toward the right end of green, toward the yellow. 0.6 on a range of <1.5.
I've attached pages from my NutrEval, if anyone can pls take a peek. I'd SO greatly appreciate it!
 
Messages
29
Here are most of my NutrEval pages.

Even if anyone can just look at the methylation, B12, folate, etc areas, I'd appreciate it!
But if anyone can comments on anything else, I'd truly truly appreciate it!

I feel like I've been led down the wrong path so many times and I'd like to avoid doing that again as much as possible.

I recently consulted with an online practitioner who looked at my NutrEval and only looked for many one SNP on my LiveWello and told me to stop taking B12, and take tocotrienols to help get what B12 I have in my blood into my cells. Her analysis is that I am niacin deficient and I was also told to take a lot of niacin (til I flush), as well as biotin and B5, and supplements for my gut dysbiosis. The gut supplements I agree with but question the B12 part, at the very least. She said my compound hetero MTHFR isn't a problem by looking at my Figlu.

I so look forward to your help! Thank you!!
 

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Abha

Abha
Messages
267
Location
UK
Are you any nearer to setting up a decent hospital based referral service for ME/CFS patients in NI?

I haven't been over to NI for a bit and my understanding is that there still isn't a good NHS hospital based service with a physician in charge where GPs can refer patients for further help with either diagnosis or management of ME/CFS

Anyway, that is what I currently say to people who contacting the MEA and are wanting a specialist referral in NI

There is, of course, my colleague Dr William Weir, infectious diseases specialist, who makes occasional visits to Belast to see patients in a non NHS capacity

CS

In NI the politicians are still squabbling over the usual things and the Health system is in disarray.The Politicians/Medical Authorities here pay lip service to ME/CFs and to Mental Health in General.

I eventually got to the main clinic(Royal Victoria Hospital in Belfast) in 2005 as I had suspected that I had parathyroid disease(had it for about 12 years seemingly but never diagnosed by any consultant/or GP under NHS.)The young female doctor who saw me at my first appointment there wasn't interested in any of my past history(about 62 years of it!).I had loads of non NHS tests/results etc from elsewhere but she had only 10 mins or so(I was there probably 20mins?) and had a few questions on a clipboard that she wanted answers to...nothing really to do with ME/CFs....definitely nothing about Canadian or ICC criteria for such an illness(compare that to the one and a half hours that Professor Gottfries/team gave their first time patients in Sweden)

A proper assessment in the beginning would save countless lost hours in GPs clinics/elsewhere afterwards and other illnesses could be ruled out/in(?)My ME/CFS symptoms too were crippling even then(and PTHP not even mentioned and B12 barely touched on)).The main CFS/ME doctor who also lectured in Queen's(in Medicine)wrote on my report that he didn't require to see me further.I believe he had his own clinic too in another town here.Some time later he was under investigation by the GMC as some doctor had reported him re unsafe results(59 patients?)...What about mine too?

That Dr/whistleblower should have been applauded but he/she probably lost their job/demoted?I'm not sure what happened then but he(doctor/RVH) resigned(around 2010/11?)As far as I know that it was it and probably the GMC investigation was never carried out.(That negligence has affected patients like me since and I'm still battling with that today)I'm not sure if he was able to continue lecturing or not but recently I had an appointment with a young GP here(a follow up from my PTHP treatment in England)in my GP's Clinic as I still have terrible gut/brain problems and Mitochondrial dysfunction problems(indicated by Howard Mc Laren's Tests from Acumen Lab(through Dr Myhill/Powys)..and find it very hard to walk or do anything.I have had PEM for years(since my 30s).

That young doctor looked at me with a blank look on her face when I mentioned"brain fog "etc..I then asked her if she knew anything about ME/CFS(see thread in Treatment Discussion Section where I posted this earlier)She replied that she had never heard of it.How can that be in 2017? In the USA Professor Komaroff (Harvard/Clinician/Researcher in ME/CFS)says there are over 9000 Scientific papers now that show this is a Physical illness/disease and that there can't be a dispute re that(see Llewellyn King interview on youtube November 2016).

Dr Anthony Komaroff on ME/CFS Treatment and Research | Ep 85


...I gave her(young doctor) some info re links to look on you tube re Professor Gottfries etc


Interview with Professor Carl-Gerhard Gottfries, Part 4: Continued Research


.What are they teaching doctors in Medical School in UK these days?The ME/CFS Associations need to make sure that this subject is being covered there.It clearly isn't here in NI.Professor Komaroff(Harvard) says that all Medical Teaching Hospitals in USA now have books on ME/CFS and that in a survey by CDC that over 50% of doctors in USA now believe in ME/CFS..That needs to happen here too.It should have been the case years ago and now ME/CFS Associations should see that this is the case.

Re Dr Weir I had chat with him at one of the meeting here.I believe it was when Dr Enlander came over to speak on ME/CFS in 2012(?) in Lansdowne Hotel in Belfast.The Newry and Mourne ME/CFS Group had invited him over(I believe).Dr Weir's background was in Tropical medicine as far as I recall but, like many other doctors(like Dr Enlander too/virologist) he had taken an interest in ME/CFS and he chaired that meeting.In the past i have seen people like Dr Kingsley and Dr Durrant-Peatfield(the latter I have seen many times)....and I know Dr Ann Mc Intyre(retired?)too.
 
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Messages
29
Here's more info, if this may help. I'd greatly appreciate any feedback!

BTW my lithium levels are pretty much non-existant at <0.1 (range is 0.6-1.4)

Other recent labs results that are off:
Iron serum low at 14 (range is 27-1559)
Iron sat 3%
Ferritin 5
Hemaglobin, MCV and MCH are all low
ALT slightly elevated (on and off elevated ALT & AST)
Tryptase is low at 1.9 (range is 2.2-13.2)
(Homocysteine is fine)

My main known issues are: Multiple Chemical Sensitivity, adrenal fatigue, many food intolerances, leaky gut, chronic gut dysbiosis, chronically low iron and ferritin, and more

Detox Profile SNPs (Genetic Gene)

APOE rs429358 ++ (Live Wello)
CYP1B1 L432V rs1056836 CG +/-
CYP1B1 N453S rs4800440 CT +/-
CYP1B1 R48G rs10012 CG +/-
CYP2C9*2 C430T rs799853 CT +/-
CYP2D6 S486T rs1135840 CG +/-
CYP2D6 100C>T rs1065852 AG +/-
GSTP1 I 105V rs1695 GG +/+
GSTP1 A114V rs1138272 CT +/-
SOD2 A116V rs4880 GG +/+
SOD2 rs2758331 CT ++
(LiveWello)
NAT2 I114T rs1801280 CT +/-
NAT2 K268R rs1208 AG +/-

Methylation Profile SNPs (Genetic Genie)

COMT rs6269 GG ++ (Live Wello)
VDR Taq rs731236 AA +/+ (listed as -/- on Live Wello?)
VDR Fok rs2228570 AA ff (
Amy Yasko Methylation Pathway Analysis)
MAO-A R297R rs6323 TT +/+
MTHFR C677T rs1801133 AG +/-
MTHFR A1298C rs1801131 GT +/-
MTR A2756G rs1805087 AG +/-
MTRR A66G rs1801394 GG +/+
MTRR A664A rs1802059 AA +/+
BHMT- 02 rs567754 TT +/+
BHMT - 08 rs651852 TT +/+

CBS ? rs4920037 AG +- (LiveWello)
CBS C699T rs234706 AG +/-
FUT2 rs492602 ++ (Live Wello)
FUT2 rs601338 ++
FUT2 rs602662 ++
 

JasonUT

Senior Member
Messages
303
You have a lot of B-vitamin deficiencies. I believe these all work as a team. It seems it may be hard for the body to function with such a wide range of B-Vitamin deficiencies. Now the challenge is how to fix it. I hope you get answers.
 

caledonia

Senior Member
If you can get a copy of the Practitioner's version of your test, not just the Patient copy, you can get Nutreval's interpretations.

You can get a further interpretation by using the Nutreval Interpretation Guide, which can be accessed by clicking on the link in my signature. This is a compilation of Rich Van Konynenburg's interpretations posted on this board over time. Rich was a much respected ME/CFS researcher, who unfortunately passed away in 2012.

Just at a quick glance, you have a lot of stuff going on - gut dysbiosis, low overall glutathione, lots of detox SNP mutations, a glutathione double mutation, the MTHFR double hetero mutations, current exposures to metals, some mineral deficiencies, lots of B vitamin deficiencies.

You're probably not methylating or detoxifying very well.

My main known issues are: Multiple Chemical Sensitivity, adrenal fatigue, many food intolerances, leaky gut, chronic gut dysbiosis, chronically low iron and ferritin, and more

According to Andy Cutler, the MCS is caused by mercury + arsenic, and I can confirm this is true in my own case. Adrenal fatigue can be caused by mercury, as well as the gut issues. I've had those too.

The low magnesium is probably due to adrenal fatigue. If the adrenals aren't working well, you'll be losing electrolytes - magnesium, sodium and possibly potassium. You'll feel a lot better if you supplement with those. Note that magnesium is a co-factor for numerous enzymes and pathways in the body.

Question - "how" are you taking methylcobalamin - oral pill, sublingual liquid or lozenge, or injection?
 
Messages
29
@caledonia

I am sorry! I dropped the ball on this conversation.

~ I was taking methyl B12 via lozenge. I just bought adeno/hydroxy B12 liquid to try but afraid to. When I started taking my B complex and Mb12, I started feeling worse.. on the couch with lower leg aches again and feeling drained and drugged.

~ I don't seem to have issues with elevated mercury (or lead) levels... on any test I've had. Cadmium, arsenic and uranium- yes.

~ Do you think I may have a sulfur issue with the CBS C699T +_ ? I also have other SNPS that I read where related but can't remember which ones they were. BHMT?? (How does anyone keep track of so much info when one does so much research!?!??) (would posting my actual Genetic Genie print out be helpful?)

I cheated and had a big bowl of broccolini for dinner about a week ago... I woke up in INTENSE abdominal pain.. mostly right side and higher up than usual. It was terrible!! And it wasn't all about passing gas, which is what usually happens.
Similar excruciating pain but different location happened a couple years ago after eating sauerkraut. Both foods contain sulfur, right? Just wondering if that might be an indicator. I don't have other reactions, except gut.

~ I am looking seriously into Martin Pall's NO/ONOO protocol. Seems some of my results may validate this as an good option. Are you familiar with it? Tried it?

~ Can you please tell me what you think?... I had a consult online for my NutrEval and she told me my FIGlu and sarcosine "are fine" so that indicates methylation is not an issue. ??? My FIGlu is in the green but it's closer to the yellow and the sarcosine is almost to the yellow. (I don't understand all this yet, but am trying to learn with your and other's kind help!) Someone else here thought I DO have a methylation issue, which what I was thinking.

She told me to take niacin and find a dose just before I start to get the flush and continue with that . (Isn't niacin for those who over-methylate?) I don't think that's me.. is it?... but trying to make sure I understand correctly. She also told me to stop B12 ( edited: at one point my serum B12 was sky high, now in normal range, maybe that's why) , take biotin and B5, as well as to take tocotrienols to get the B12 in my blood into my cells. Didn't think I needed lithium, despite low lab results and functional B12 deficiency. I am just wanting to be sure whether to totally disregard the info I got from her or not. It's been suggested to me that's I've gotten bad advice and would like your take on it.

I printed the NutrEval Interpretation Guide and asked my Dr to get the physician's summary report from Genova. They wouldn't allow me to request it. Sigh.

Any other thoughts would be appreciated.

Thank you so much!
Natalija
 
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caledonia

Senior Member
@caledonia

I am sorry! I dropped the ball on this conversation.

~ I was taking methyl B12 via lozenge. I just bought adeno/hydroxy B12 liquid to try but afraid to. When I started taking my B complex and Mb12, I started feeling worse.. on the couch with lower leg aches again and feeling drained and drugged.

Taking it sublingually via lozenge should allow it to bypass the stomach. So it sounds like the issue is getting it into the cells.

Your symptoms of getting worse sound somewhat like mine - feeling achy and crashed similar to having PEM. I have to limit my intake to very low levels to avoid this.

It's easy to dilute the liquid with water using a dropper bottle, so you can start with a very low amount to test the waters. I have instructions in the Start Low and Go Slow document.

~ I don't seem to have issues with elevated mercury (or lead) levels... on any test I've had. Cadmium, arsenic and uranium- yes.

It depends on what kind of test and how it's interpreted. What Cutler uses is the Doctors Data hair test with both toxic and essential elements (toxic metals and minerals). You actually mostly disregard the metals portion and look for disordered mineral transport with Cutler's counting rules. This is evidence of mercury disrupting things in the body. It's like finding fingerprints at a crime scene. The mercury usually doesn't show up on the metals portion of the test because it's squirreled away in the tissues and brain. It also won't show up on a blood test unless you have a current exposure.

~ Do you think I may have a sulfur issue with the CBS C699T +_ ? I also have other SNPS that I read where related but can't remember which ones they were. BHMT?? (How does anyone keep track of so much info when one does so much research!?!??) (would posting my actual Genetic Genie print out be helpful?)

I cheated and had a big bowl of broccolini for dinner about a week ago... I woke up in INTENSE abdominal pain.. mostly right side and higher up than usual. It was terrible!! And it wasn't all about passing gas, which is what usually happens.
Similar excruciating pain but different location happened a couple years ago after eating sauerkraut. Both foods contain sulfur, right? Just wondering if that might be an indicator. I don't have other reactions, except gut.

Possibly. You can go to the free thiol list page and follow instructions for a sulfur elimination and reintroduction test.
http://www.livingnetwork.co.za/chelationnetwork/food/high-sulfur-sulphur-food-list/

~ I am looking seriously into Martin Pall's NO/ONOO protocol. Seems some of my results may validate this as an good option. Are you familiar with it? Tried it?

I took a look at the protocol. The glutathione possibly and the ALA taken once a day definitely would be problems if you have mercury (probably). http://www.prohealth.com/library/showarticle.cfm?libid=17947

~ Can you please tell me what you think?... I had a consult online for my NutrEval and she told me my FIGlu and sarcosine "are fine" so that indicates methylation is not an issue. ??? My FIGlu is in the green but it's closer to the yellow and the sarcosine is almost to the yellow. (I don't understand all this yet, but am trying to learn with your and other's kind help!) Someone else here thought I DO have a methylation issue, which what I was thinking.

If you use the Nutreval Interpretation Guide, you can figure out Figlu and if you have a methylation problem.

She told me to take niacin and find a dose just before I start to get the flush and continue with that . (Isn't niacin for those who over-methylate?) I don't think that's me.. is it?... but trying to make sure I understand correctly. She also told me to stop B12 ( edited: at one point my serum B12 was sky high, now in normal range, maybe that's why) , take biotin and B5, as well as to take tocotrienols to get the B12 in my blood into my cells. Didn't think I needed lithium, despite low lab results and functional B12 deficiency. I am just wanting to be sure whether to totally disregard the info I got from her or not. It's been suggested to me that's I've gotten bad advice and would like your take on it.

Everyone needs some niacin - it's one of the B complex vitamins. The question is, do you need to supplement it? It can either be used as a rescue for overmethylation or to smooth out mood swings for those with COMT mutations. If you take small amounts like under 50mg, it shouldn't soak up methyl groups and slow methylation.

Lithium is supposed to help with B12 transport into the cells. It sounds like that would be something to try.

I printed the NutrEval Interpretation Guide and asked my Dr to get the physician's summary report from Genova. They wouldn't allow me to request it. Sigh.

It's your report, that you paid for, whether you paid for it out of pocket, by insurance, or by your taxes. I don't know if it would be ok to go back and insist that your doctor give you what you paid for or not, in terms of keeping a good relationship with your doctor. Maybe you can contact Genova directly and ask for another copy or something.

I found the best info from the Nutreval Interpretation Guide, and maybe a few things from the physician's copy.
 
Messages
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Taking it sublingually via lozenge should allow it to bypass the stomach. So it sounds like the issue is getting it into the cells.

Your symptoms of getting worse sound somewhat like mine - feeling achy and crashed similar to having PEM. I have to limit my intake to very low levels to avoid this.

It's easy to dilute the liquid with water using a dropper bottle, so you can start with a very low amount to test the waters. I have instructions in the Start Low and Go Slow document.



It depends on what kind of test and how it's interpreted. What Cutler uses is the Doctors Data hair test with both toxic and essential elements (toxic metals and minerals). You actually mostly disregard the metals portion and look for disordered mineral transport with Cutler's counting rules. This is evidence of mercury disrupting things in the body. It's like finding fingerprints at a crime scene. The mercury usually doesn't show up on the metals portion of the test because it's squirreled away in the tissues and brain. It also won't show up on a blood test unless you have a current exposure.



Possibly. You can go to the free thiol list page and follow instructions for a sulfur elimination and reintroduction test.
http://www.livingnetwork.co.za/chelationnetwork/food/high-sulfur-sulphur-food-list/



I took a look at the protocol. The glutathione possibly and the ALA taken once a day definitely would be problems if you have mercury (probably). http://www.prohealth.com/library/showarticle.cfm?libid=17947



If you use the Nutreval Interpretation Guide, you can figure out Figlu and if you have a methylation problem.



Everyone needs some niacin - it's one of the B complex vitamins. The question is, do you need to supplement it? It can either be used as a rescue for overmethylation or to smooth out mood swings for those with COMT mutations. If you take small amounts like under 50mg, it shouldn't soak up methyl groups and slow methylation.

Lithium is supposed to help with B12 transport into the cells. It sounds like that would be something to try.



It's your report, that you paid for, whether you paid for it out of pocket, by insurance, or by your taxes. I don't know if it would be ok to go back and insist that your doctor give you what you paid for or not, in terms of keeping a good relationship with your doctor. Maybe you can contact Genova directly and ask for another copy or something.

I found the best info from the Nutreval Interpretation Guide, and maybe a few things from the physician's copy.

Thanks so much!
I am sorry but I am not sure how to copy/quote certain parts of your reply..... I tried in my previous reply but it didn't work.

Sorry that I wasn't clear re: the NutrEval physician summary... it was Genova that wouldn't let me request it. My Dr said she will. She didn't even know they offered it and was not happy that they don't automatically send it. However, she is a one woman show... no staff, just herself in a little house transformed into her practice. She is so busy, things take a long time to get from her, but we love her regardless! ;-)

I did have the Doctor's Data Hair Elements done when I first got sick in 2010. Low mercury, thankfully. But I am not familiar with what you are referring to.

I did download and print your Start Low and Go Slow document. Thanks!
 

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@caledonia (i forgot to put your name in my previous reply)

"If you use the Nutreval Interpretation Guide, you can figure out Figlu and if you have a methylation problem."

My problem is that I am not sure as my FIGLU is in the green but about 3/4 of the way to the right. Does that mean it's elevated? My sarcosine is also in the green but close to the yellow... so high normal, right? I don't know what constitutes for elevated in this case. Any clarification is appreciated! Thanks!
 

caledonia

Senior Member
Thanks so much!
I am sorry but I am not sure how to copy/quote certain parts of your reply..... I tried in my previous reply but it didn't work.

Sorry that I wasn't clear re: the NutrEval physician summary... it was Genova that wouldn't let me request it. My Dr said she will. She didn't even know they offered it and was not happy that they don't automatically send it. However, she is a one woman show... no staff, just herself in a little house transformed into her practice. She is so busy, things take a long time to get from her, but we love her regardless! ;-)

I did have the Doctor's Data Hair Elements done when I first got sick in 2010. Low mercury, thankfully. But I am not familiar with what you are referring to.

I did download and print your Start Low and Go Slow document. Thanks!

Physician summary - that's awesome that your doc will get it for you. I guess just be patient and give her a nudge if it's taking too long.

=-==-=-=-

I have further info on the hair test and chelation in my signature link, under the Cutler section.

I looked at Cutler's Hair Interpretation book:

The hair test - the mineral section looks normal. It could mean that you were supplementing with minerals in the months before you took the test which would normalize the test. Or it could actually be normal which means the toxic elements accurately reflect the body burden of the elevated metals.

However, if you're on this forum with fatigue, MCS etc. - those are symptoms of metal toxicity. I wouldn't rule out that you have metals. The test is from awhile ago (2010). If you retested, and had more exposures adding up in the meantime, the test could look different.

Plus your Nutreval was showing current exposures to metals (it's a blood test, so it shows current exposures).

So the hair test shows - arsenic, cadmium, uranium (past exposures)
The Nutreval shows - a touch of lead, antimony, arsenic, cadmium (as current exposures)

Arsenic alone could screw you up - arsenic inhibits the carbohydrate pathway and also the Kreb's energy cycle (citric acid cycle) and the mitochondria.

I'm still kind of new to interpreting the hair tests. There are a lot of subtleties I haven't learned yet. If you wanted a more comprehensive interpretation, you could submit it to the Frequent Dose Chelation Yahoo group. (look at the Cutler link in my signature link for instructions).

I have also seen the people at the Cutler forum suggest doing a trial of chelation if you have a normal test, but also have symptoms which can be caused by metals. Then how you react to the trial can tell you if the metals are an issue or not, and if chelation is suggested.

=-=-==-=-

Nutreval - from the Nutreval Interpretation Guide - your Figlu is normal looking. Histidine (which can mask Figlu) is normal looking. Another marker for folate, sarcosine is normal. However, you have a very high need for B2 and B6 which means those are very low, which means that could be masking your Figlu value.

I'm not sure if your Figlu would be high or low if it wasn't masked. High means low folate. Low means a partial block in methionine synthase which results in folate being blocked (as a result of low B12, a co factor, or metals, etc.) Of the metals showing up on your tests, cadmium and lead would be the culprits to block methionine synthase.

You also have somewhat elevated methylmalonic acid which means you have a functional B12 deficiency and glutathione depletion. It could look even higher if B2 and B6 weren't depleted.

It seems like you're not able to get enough B12 into the cells to compensate for the amount of toxins you're dealing with.

Overall, I think it would be good to figure out where your current exposures are coming from and to get those out of your life. Cutler's Hair Interpretation book has good info on this.