SURVIVING NEUROLOGICAL LIMBO LAND - NO DX User Group
DEFICIENT TEST RESULTS
About This Group:

This is a group for anyone who is currently living in limbo land with a neurological disorder but doesn't have a diagnosis. Many people are living with chronic and disabling neurological problems which mirror such diseases as multiple sclerosis, lupus, M.E., Fibromyalgia, Lymes disease, Vitimin D deficiency, Migraines, Parkinsons yet have no diagnosis and are left to literally struggle on alone. I have set up this group to help support people through their journey, whether its just for a moan, sharing a joke, experiences, advise on how to survive just plain anything. I know there are a lot of us out there. Anyone who feels lost, or needs to share or just wants a big hug please join, there will always be someone to give you support. OUR MOTTO IS: "we are still all in this together..no matter what point of our journey we are in...limbo, dx. or just joining...we are all here for a reason...to seek support, make a friend and find answers..."

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DEFICIENT TEST RESULTS

On one blood test that have come back I am deficient on :

B12, Choline, Oleic Acid, Zinc, Gluthatione, Vitimin E, Spectrox.

I am gutted as I eat really healthy. I drink almond milk every day which is high in Vitimin E, it doesnt make any sense.

They want me to start on supplements.

Vitimin B12 1,000 mcg daily in injectable format.

That sounds a lot of to me.

My B12 was 10. It should be >14% is that really that low?

My glutathione was 31 and it should be >42.  Mariax
Tags: Vitamin B12 Deficiency, b12 defiency
12 Comments
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Well Maria I can't offer any advice but I sure think that is a lot of deficiencies but I'm glad they are starting you on supplements to get you going in the right direction and with MS and all the other things you have going on maybe some relief will come for some of your symptoms.

I'm wishing the best for you and praying the Lord will bless you with some better days ahead!

Keep us posted on the remaining bloodwork results.:)
They've got to be better than this.lol

Love filled hugs,
Tammy:)
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1530171_tn?1362547225
Hey Maria,

B12 1000 mcg daily is far too much as your body can only absorb 10 mcg daily. So even if you were to absorb only 5%, that would mean 50 mcg or 5 times your daily capacity. So 250 mcg daily would make more sense.
Again I must stress to take only sublingual Methylo-cobalamin.
Weekly shots of Cyano-cobalamin, are not as effective and also are potentially dangerous, as even the minute amount use( deemed safe??? my you know what!!!) of cyanide -used for B12 transport- may cumulative effects since the body cannot process it effectively as waste.

Glutathione supplementation is very delicate.
For this I personally take 10-20 grams of UNDENATURED WHEY PROTEIN POWDER ISOLATE mixed by spoon or whisk (No Heat and No Blender!!!) twice daily. Make sure if you decide for this that you pay attention to get the right type and to use it as I mentioned.
I buy the unflavoured variety and mix it in my smoothie.
You can mix it in vegetable juice if you're doing the anti-fungal program
(sugar is an "illegal" item). It is totally neutral for taste.

Vitamin E purchase only natural. One Tbsp of  fresh wheat germ oil meets
the minimum daily requirements of Vit.E

Oleic acid?? You're of Italian background (sorry for your loss to spain yesterday) and olive oil -the best source for oleic acid- probably runs in
your blood!! Paradox or mistake, it doesn't matter, just put extra extra virgin
olive oil in your salad dressing!

Choline is a very important nutrient, essential for many functions for the brain and the body. Liver is the best source. Also beef, beans. tofu eggs
are all good sources.

Best source for Zinc are Oysters, beef, dark chicken meat and seafood.
Plant origin zinc is not as bioavailable.

Spectrox, is this a type of a test or multi-ingredient supplement name?
I'm not familiar with this deficiency, if this is the case.

Many blessings!
Ciao
Niko



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551343_tn?1350880995
Hi thanks for all that very very helpful.

I think whoever typed the b12 made a mistake lol. Even i thought it was high lol. I am seeing my GP about that one anyway.

As to the rest well i dont get it as i said on my other post i eat really healthy, always always always.

So I am obviously slipping. I need to reavaluate my diet I think. Because i have been so ill with my other issues i dont cook much now, I buy food made from a specialist place who make healthy meals. I always choose healthy options. Perhaps I need to find the strength again to cook myself.

I dont eat beef, I was told to avoid it.

I will sort it though, what you have wrote has helped me a lot thank you. Mariax
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551343_tn?1350880995
Beans? which beans are you referring to?

I am thinking of getting some tofu and making a healthy stir fry. x
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http://www.webmd.com/a-to-z-guides/vitamin-b12-deficiency-anemia-treatment-overview
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Tofu from Organic soy beans only, as non-organic are laden with phytochemicals and may be genetically modified.
best choice is organic spouted soy bean tofu. I had tofu-roti 2 days ago
an indian roti style vegetarian dish with greens onions with this type of tofu.
Delicious!!!
For choline lentils and soy beans are descent sources, however, beef,poultry, eggs and seafood are better.
My daughter had to eat red meat (she only eats pastured or organic) despite the advice against it for various reasons and her own beliefs. Border line anemia is very serious!!! it was tough for her as she was a strict vegan prior to that. Now she's doing much better.
Supplementation for iron is problematic for most people.
For what reason were you told to avoid beef?

Finally, a healthy diet,  with your own cooking (preferable) or someone else's is no guarantee.
"You are what you absorb, assimilate and eliminate."
Not what you eat! These are the new rules in Nutritional Medicine.

You need to find the "Inner" strength to do various things, one of them
being cooking. You are right about that and it will help in other aspects also.
gtg!
Love and Hugs,
Niko

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Lyme and coinfections mess up the body in many different ways, even if you eat really well. You are providing your body with the right nutrients, but they are getting usurped or blocked by your infection.  In some ways, the bacteria use up a particular element, such as magnesium.  In other ways, they block absorption of something.  Sometimes there is a bit of a domino effect where one shortage triggers another one.  Magnesium, B12, and D are the most common deficiencies, but other minerals and vitamins can also be deficient.

I am sure you are better off because of your healthy diet.  Keep it up!

I highly recommend magnesium.  I take 600mg a day of a blend of different kinds.  Types ending in -ate are better absorbed.  Magnesium is good for healthy heart and nerve function.  I can feel it when I am due to take my next supplement. For me, it eases my shortness of breath.  

I also do Methyl-B12 injections.The B12 shots immediately eased my fatigue.  I still do them 4 times a week. They have also shown that Omega 3s are even better for brain function that previously thought.  My doc tripled my intake at my last appointment.  I take 3000mg a day now.

I recommend you take whatever supplements your doctor recommends, as you simply may not be able to get enough from food at this point.  It will change as you begin to heal, so you may want to get retested for deficiencies in a few months.
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Hey Maria and Rico,
Ultimate Wellness 101.
They should teach this in Universities. ( Not a chance, Big Pharma and Conventional  Medicine would stand to lose too much )

Glutathione (GSH) There are 10s of thousands of studies (80,000 one
of my holistic colleagues was saying)
Here are some:
Bounous G. Whey protein concentrate (WPC) and glutathione modulation in cancer treatment. Anticancer Res. 2000 Nov-Dec;20(6C):4785-92.
Bounous G., Gold P. 1991. The biological activity of undenatured dietary whey proteins: role of glutathione. Clin Invest Med. Aug;14(4):296-309.
Dickinson D., Iles K., Zhang K., Blank V., and Forman H. (2003) Curcumin alters EpRE and AP-1 binding complexes and elevates glutamate-cysteine ligase gene expression. J FASEB 17, 472.
Donnini D., Zambito A.M., Perrella G; Ambesi-Impiombato F.S., Curcio F. Glucose may induce cell death through a free radical-mediated mechanism. Biochem Biophys Res Commun. 219(2):412-7 1996 Feb 15.
El-Hawary Z., El-Hawary M.F.S., Morcus S.R. 1977. Blood glucose, glutathione, and total keto-acids levels in alloxan-diabetic rats. Zeitschrift für Ernährungswissenschaft 16(4): 227-230.
Fidelus R.K., Tsan M.F. Glutathione and lymphocyte activation: a function of aging and auto-immune disease. Immunology. 1987 61:503-508.

Glutathione White Paper. Richard Van Konynenburg, PhD.
Herbert F.K., Cotonio Bourne M., Groen J. 1930. The effect of glutathione on the determination of blood-sugar. Department of Chemical Pathology, St. Bartholomew’s Hospital, London.
Higashi T., Tateshi N., Naruse A., Sakamoto Y. (1977) A novel physiological role of liver glutathione as a reservoir of L-cystein. J Biochem. 82, 117.
Huh K., Kwon T.H., Kim J.S., Park J.M. Role of the hepatic xanthine oxidase in thyroid dysfunction: effect of thyroid hormones in oxidative stress in rat liver. Arch Pharm Res; 21(3):236-40 Jun 1998.
Loven D., Schedl H., Wilson H., Daabees T.T., Stegink L.D., Diekus M., Oberley L. Effect of insulin and oral glutathione on glutathione levels and superoxide dismutase activities in organs of rats with streptozocin-induced diabetes.
Meister A. (1983) Selective modification of glutathione metabolism. Science. 220, 472.
Meredith M.J., Reed D.J. (1983) Depletion in vitro of mitochondrial glutathione in rat hepatocytes and enhancement of lipid peroxidation by adriamycin and 1,3Bis(2-chloroethyl)-1-nitrosaurea (BCNU). Biochem Pharmacol. 32, 1383.
Powell L.A., Warpeha K.M., Xu W., Walker B., Trimble E.R. High glucose decreases intracellular glutathione concentrations and upregulates inducible nitric oxide synthase gene expression in intestinal epithelial cells. Journal of Molecular Endocrinology. December 1, 2004 33:797-803.
Seymen, O., Seven A., Candan G., Yigit G., Hatemi S., Hatemi H. The effect of iron supplementation on GSH levels, GSH-Px, and SOD activities of erythrocytes in L-thyroxine administration. Acta Med Okayama. 51(3):129-33 1997 Jun.
Stohs S.J., Lawson T., Al-Turk W.A. (1984) Changes in glutathione and glutathione metabolizing enzymes erythrocytes and lymphocytes of mice as a function of age. Gen Pharmacol. 15, 267.
Tsan M.F., Danis E.H., Del Vecchio P.J., Rosano C.B. (1985) Enhancement of intracellular glutathione protects endothelial cells against oxidative damage. Biochem Biophys. Res. Commun. 127, 270.
Wellner V.P., Anderson M.E., Puri R.N., Jensen G.L., Meister A. (1982) Radioprotection by glutathione ester: transport of glutathione ester in human lymphoid cells and fibroblasts. Proc. Natl. Acad. Sci. U.S.A. 81, 4732.

From my earlier reply, the whey powder I mentioned, I purchase it bulk
from Quebec at a descent price. if you need details, I'll get them for you
Rico ( Mary I don't know if they would ship to England as it would cost a lot for shipping). They do ship to the USA .

Along with Extra Virgin Coconut Oil for "Oil Pulling" and cooking,
Transdermal Magnesium Oil (you ought to try it Rico as it is superior to anything else that has to do with Mg supplementation and your skin will LOVE it as well) these are my Big 3, that are responsible for keeping me
infection, inflammation and disease free for a very long time.
Of course meditation, proper breathing, self hypnosis and activity
do play a major role in this.
As far as supplementation goes though, the above Big 3 are truly life savers
and do promote wellness.
If I would add something to this mix it would be D3 or exposure to the sun,
B12 (Methylo-cobalamin) and Omega 3, on a must take basis, specially if you have issues.

Careful with taking nutritional advice from doctors.
I take it that yours Rico is open and knowledgeable. That is exceptional!
My wife worked as a clinical dietician in the past,
and I have some stories to tell (another time).
Medical schools devote very little time for the study of nutrition.
Just get hold of any medical school detailed program of courses,
You will be at least very disappointed, if not shocked, with the number
of hours in Pharmacology and related subjects and so little on Nutrition.
"Just follow the money" they say.

Take care,
Niko
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Thank you for the info! I have already done some research on Magnesium oil. I have been taking oral supplements for months and went from twice a day to three times a day. I am at the maximum I can take due to the laxative effect. (I do take epsom salt baths occasionally, which also seems to help.) I can feel my air hunger kicking in when I am due for another dose.  I think because my gut is so messed up, I am not absorbing much and I never get caught up on my deficiency. I am excited about trying the magnesium chloride oil!

I will research glutathione next...

You are a wealth of info!  And yes, I agree the medical community is woefully unaware of nutrition.  My close relative of mine is retired now, but when she was in one of the top nursing schools in the 60's, she was taught that vitamin and mineral supplements are a scam and that you just need to "eat healthy" and you're fine. (Note...she is quite overweight and has numerous health problems, even though she insists she eats "healthy." It seems that "healthy" is not well defined. ) She still mostly believes this!

My doctor is very knowledgeable about supplements... Some of the ones I am on are available only through doctors as they are truly medicinal.  Some come from Europe, and others are the basic OTC stuff.  I really like the fact that he incorporates natural treatments with more powerful antibiotics to treat Lyme.  It seems the best of both worlds to me.
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Hi its a mind field. I more stressed over what to take over the defiency then i am about having Lymes.

So much contradiction out there. Try this oil, that supplement, dont take this its bad for you lol on and on.

I have sat down and worked out all the foods I need to eat to keep up my intake, and I would like to take a few supplements. I read Magnesium Malate was good, but i found the oil on ebay its 33.00 pounds for 500ml.

I have decided anyway to book with my nurse and go through nutrion with her, so I know where i am. I am truly more stressed over this then any of the rest of it lol. Stupid isnt it.

I have booked tuesday for the blood test for lymes I found out what it was. i she wants me to have the IVL-001 = Lyme MELISA and Immunoserology Of Lyme Panel B.
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Hi Maria.
Just b4 bedtime for me.
No need to be confused my dear. KISS-keep it simple stupid- has a nice ring to it!

Magnesium.
Make your own Magnesium Oil!  It costs a fraction of the ready made.
Purchase the magnesium chloride flakes, mix with hot water 50-50
in a glass container and transfer when cool to a plastic spray bottle.
Spray all-over your body and rub. If too strong dilute further.
Avoid sensitive areas. wait about 30 minutes and then shower well!
Repeat daily at first.

Glutathione.
Check for  certified Undenatured whey protein powder.
Mix 1T with water or vegetable juice or yogurt 2-3 times daily.
No heat, no blender!!!
There's also Transdermal Glutathione available, but I have no personal experience with it.

D3.
Sub-lingual drops emulsified D3, 2000 IU daily

B12.
Sublingual as Methylo-Cobalamin 250-500 mcg daily

Zinc
Elemental zinc 10-20 mg daily,  1H away from food and antibiotics.
Liquid Ionic Zinc -no personal experience- is supposed to be best.

Choline
250 mg  choline bitrtate daily just before breakfast or lunch.

Omega3
1000 mg 2-3 times daily (from small cold water fish preferably) away from warm or hot foods.

Oleic Acid.
Keep using plenty of extra virgin olive oil in your salad daily.
No need to buy a supplement.

Vitamin E
Natural tocopherol complex 50-100 IU daily

Anything I missed?


These tests for Lyme disease utilise a novel method called multi-peptide ELISA (enzyme-linked immunosorbent assay), which is a form of serological test i.e. looking for antibodies to the Borrelia
antigen.  It is similar to, but more sensitive than, the ELISA technique.  It is not the same as the Western blot or Lymphocyte transformation test.  
Immunosciences new generation assessments for Lyme disease deal with the measurement of antibodies to antigens of Borrelia grown in culture, as well as the proteins associated with spirochaete expression of a variety  of antigens during human infection.  The Lyme profiles assess infection with three different subspecies of Borrelia and antibodies, reaction to Babesia, Ehrlichia
and Bartonella.  
Lyme Panel A includes multi-peptide ELISA testing for Borrelia burgdorferi, Borrelia burgdorferi
sensu stricto, Borrelia garinii, Borrelia afzelii, Babesia, Ehrlichia and Bartonella.
Immunoserology of Lyme Panel B measures Lyme Panel A as well as a standard Western Blot for Borrelia burgdorferi IgG and IgM antibodies.
Source: Breakspear Medical Group.

The MELISA format is a newer Lymphocyte transformation test( LTT )
LTTs  were in the past of limited clinical usefulness, because of the poorly defined Borrelia Antigens and nonstandardized LTT formats used.

May be after all she's on to something with this.
Have a good day.
Need to catch some ZZZs now!
Hugs!
Niko










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I got stressed out over supplements, too.  But really, you don't need to worry, as your doctor knows what she is doing.  Just take whatever they recommend, and then over time, as you start to feel better and you can handle a bit more, you can do some research to see what you might want to add to your regimen.

I am taking a number of supplements my doc put me on, as well as a handful I found through my own research.  I call the office and ask if it is okay for me to take something, and I usually ask for which brands they recommend.  There is a lot of poor quality stuff out there.  

You don't have to deal with everything all at once.  This healing process is a journey, and it is important not to add stress where it isn't needed.  You have been sick for a long time, and your recovery could easily take a couple years in total. (I had Lyme + Bartonella 6 years before diagnosis and my doc estimates 15 months for me.  Now, with delays in treatment due to kidney overload, it will probably be longer.)

Your most important focus now is on getting better without stressing out. ;)
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