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DebE13
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Post by DebE13 »

Gabes, yes he is the one who takes his vit D because I ask him to. :lol: He trusts what I say, given he has first hand experience with witnessing a glimmer of what I've dealt with, and that is an easy request to honor because there is no real effort- he has to take a two meds in varied doses both at morning, noon, and night so it's just a matter of dropping the vit D in his pill box.

I tend to go all-out when I learn something new and act on the spot. That isn't his personality so I will have to give it time. He already has learned he is not exempt from health issues so I know he is considering adding another problem to his list that could potentially be prevented is in his best interest.

Cindy and Lisa, thanks for sharing your stories...that is so encouraging. It's a hard adjustment for anyone but a young single male in the dating scene seems insurmountable. Although, a good friend of mine just learned his elementary school aged daughter is celiac and I think how terrifying that must be because she may not understand the impact her choices have on her health yet. You can't follow them everywhere. She is fortunate because the mom has a sibling with the same dx so she understands what she needs to do.

My son will be going off to live in the dorms at the end of the month so eating campus food may make it challenging if he chooses to go GF. He is not into cooking. He does his research too. Last year he came to me with a list of foods and supplements that he researched on his own that would help with his PSC symptoms. Everything on the list were things I've already encouraged him to incorporate into his diet (it was all things we talk about here). I only smiled and encouraged him on the good ideas because it seemed to hold more weight than when it had come from "mommy's" mouth. I remember that age well. :grin: At least he continues to run his ideas past me so my opinion must mean something!

I've always respected his point of view and told him that I cannot follow him everywhere to be sure he is doing the right thing. Also, I am not an expert so it's good to investigate credible sources for information. I believe it is important to acknowledge I don't have all the answers, don't always make the best choices myself, and will respect what he decides is right for him but If I don't agree- would like a productive discussion.

Sheila, I have family members too that I think would benefit from a GF diet but I know there is no interest so I keep my soap box tucked away.

Sometimes it makes me feel better to view my MC as the means of learning about the body so I will be able to offer support to my son as he goes through his own trials. It's easy to feel like I'm the only one out there with issues stacked up upon each other. It's a blessing to read other stories in the realization that my life is not any different than most- we all have A LOT to deal with.
Deb

"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson

2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease
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Gabes-Apg
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Post by Gabes-Apg »

Deb,
reviewing the PSC linkage to the liver

nutrient bible recommends:
Carnitine, Zinc, B3

Since correcting my nutrient/mineral deficiencies, I have not had any issues with my sclerosis.
(first time in 2 years)
Gabes Ryan

"Anything that contradicts experience and logic should be abandoned"
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DebE13
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Post by DebE13 »

Thanks Gabes! I will look into that. It's amazing how the basics are overlooked when it can be a much easier fix that adding more drugs to treat symtoms. Preaching to the choir. :smile:
Deb

"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson

2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease
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Gabes-Apg
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Post by Gabes-Apg »

Deb,
Quite a few health issues warrant medication until you can get your head around the root cause, and investigate options.

I am realistic, correcting nutrient/mineral deficiencies wont solve every health issue entirely, albeit we can lessen the intensity of symptoms, reduce the dependence on meds, and improve our quality of wellness.

if you are interested, I will dig a bit further and look at amounts etc.
Gabes Ryan

"Anything that contradicts experience and logic should be abandoned"
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DebE13
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Post by DebE13 »

That would be great! Thank you.
Deb

"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson

2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease
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Post by Leah »

I also know what you mean. My daughter obviously shouldn't be eating gluten ( skin and tummy issues). She tried GF for about a month. Skin stuff went away, but she has slowly gone back to it. It's her life. I have given her the info and hopefully one day she will take it seriously.

Leah
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Post by Gabes-Apg »

Zinc,
RDA - 15mg or 0.2mg/kg
Deficiency Correction - 10-90mg or 1-2mg/per kg of body weight/ per day.
I would not go above 150mg per day
(these are ELEMENTAL Zinc levels, double check the label to see how much elemental zinc the tablet/capsule has)

key info about Zinc
-is a biological essential metal and is the co-factor for more than 300 enzymes and proteins involved in the defense against oxidative stress, and proteins controlling responses to DNA damage

iHerb.com have well priced, no allergens zinc products. I have purchased their Zinc Piconalate (they had free Intl shipping)
my other tablet has Zinc sulfate monhydrate, the liquid I use has Zinc Sulphate
This product - two tablets a day will give 100mg

after 12 weeks, reduce down to 1 tablet a day
http://www.iherb.com/Country-Life-Glute ... blets/1753


Of note: H2 blockers decrease zinc absorption. So does the tetracycline group of meds (doxycycline, oxytetrachcline etc)
Gabes Ryan

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Post by Gabes-Apg »

B3, Niacin.
Tryptophan, Vit B2 (riboflavin) and Vit B6 (pyridoxine) in addition to iron are needed as cofactors for the conversation of tryptophan to niacin.

RDA 15-20mg
Deficiency correction 100-3000mg
(??gabes comment vast range!)

Target Tissues
Gastrintestinal tract, heart, kidney, liver, muscle, skin, spinal cord

Enzyme systems involved
- involved in more than fifty biochemical reactions

Drug Interactions
Decrease the gut synthesis of Vit B3
- Antiobiotics (pretty much all categories)

Reduce body levels of Vit B3
isonaizid, 5-fluronicotinic Acid, Bleomycin, isonicotinic Acid, metronidazole, Thalidomide

Vit B3 increases drug toxicity by interfering with drug metabolism
Anticonvulsants - primidone, carbomazepine

getting a multiple B product with B2 and B6 would be the ideal.
This B complex is a good formulation (b3 is 100mg) it does have soy in it.
http://www.iherb.com/Country-Life-Glute ... Caps/14591


this is another good formulation, but i think it has some allergens in it (info not on the page)
http://www.iherb.com/Pure-Encapsulation ... ules/51822

this one might take a bit of research to find right product - i am limited to what I can research for USA suppliers.
Gabes Ryan

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Post by Gabes-Apg »

L-Carnitine
RDA - none given
correct deficiency 400-6000mg
20mg/kg body weight/day

only 15-65% of carnitine is absorbed (absorption is variable)
oral load absorption is between 5-18%, however dietary carnitine is absorbed at 75%
L-Carinitine as a supplement is better absorbed

Synergistic nutrients
Vit B3, B5, B6, B12 C, E, folic acid, Iron, Lysine, Magnesium,
(another reason why a good b complex will be needed)

Drug/Nutrient interactions
oxaliplatin, paclitaxel, nucleoside analogues

http://www.iherb.com/Country-Life-Glute ... -Caps/6389
Gabes Ryan

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DebE13
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Post by DebE13 »

Thanks Gabes, it is very kind of you to research this. My son has labs coming up soon so I will ask about adding those to the list to see where he is at. Info is much appreciated!
Deb

"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson

2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease
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DebE13
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Post by DebE13 »

Leah, is your daughter on her own now? That's the thing I'm struggling with right now is the grocery shopping. I'm having a hard time buying sandwich bread, bagels, cereal, etc. I'm working on bringing in the GF options but it is an acquired taste. Most of "my" food he won't touch, even the Lara bars for snacks, which I find surprising because they are great! They were the first dessert I had after giving up all sweets. After months of nothing I felt like I was in heaven. Sad to say, it will be easier for me when I'm not doing the shopping.
Deb

"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson

2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease
Leah
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Post by Leah »

yes, she is on her own, so I don't have to shop for her.
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Post by Gabes-Apg »

Deb
if he can get his Zinc/Copper level tested it would fantastic!!
the results will tell us a multitude of things...
Gabes Ryan

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