For Informed People Using Alternative Treatments

Options
1568101133

Comments

  • flaviarose
    flaviarose Member Posts: 442
    edited December 2013


    http://www.lef.org/Vitamins-Supplements/ItemLC081950/Vitamin-D-25-Hydroxy-Blood-Test.html


    you can get a Vit. D. test through life extension - for $47-62 (member and non-member pricing). You don't need a doctor's order - they tell you where to get your blood drawn near you and send you the results.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2013


    Thankyou flaviarose, Im not from the US but NZ and was told they wont fund any more tests (I had the 1st 3 funded) because 1/ I was what they deemed in the normal range and 2/ it was "very expensive". This was probably over a year ago now. I get a tab 50,000 IU D3 on script and have that once fortnightly.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2013


    Musical - check your vitamin D. The 50,000 iu by prescription in the States is usually Vitamin D2, not Vitamin D3.

  • Scandophile
    Scandophile Member Posts: 71
    edited December 2013

    Thanks for the articles Flaviarose, the GcMAF looks exciting!  And thank you All for the support!!

    This dis-ease is complicated and its so hard to navigate what we should do to help ourselves. Although I am new to the forum, I have been doing a lot more reading than posting, its been very informative and helpful!

    My Onc never offered a Vit D test so I am going to ask and see if insurance will cover. I take 10,000 IU per day.

    I don't take any additional iodine other than what is in my Multi-Vitamin pack. But with all the info that's been provided here, I am going to see if this will be a right addition to my protocol.

  • hjpz
    hjpz Member Posts: 348
    edited December 2013


    I asked my oncologist about testing my iodine and he did not think it was necessary. After meeting with him I did order some iodine supplements based on all of your posts because I figured it couldn't hurt. When I asked about Vit. D my oncologist did point out that even though the medical community is aware that there is a correlation between lower Vit. D levels and breast cancer rates they are still not sure whether increasing your Vit D level will have any impact because it is still in the clinical trial phase. But again, if my Vit D level is low when I get my testing done I see no harm in taking a supplement to raise it.

  • Scandophile
    Scandophile Member Posts: 71
    edited December 2013

    When I told my Onc that I added Vit D3 to my regimen, he was pleased. He is a bit of a quiet supporter it seems. He won't necessarily volunteer any info, but when I ask him, he is all full of tidbits!  He was also very glad that I radically changed my diet and lost 30 something lbs. He never told me to do this, but when I did it on my own, he was like, "now you have reduced your risk of further mets". I think he is a little afraid to give advice for some reason.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2013


    Thanks for your responses.


    Hi sunfllowers, Yes my VIT D is definitely D3. Its called CalDForte, and only available on prescription. It is cholercalciferol. Im pretty sure when I was researching this, the 50,000IU D3 is only available here in NZ and maybe Oz. Might be wrong but I don't remember it ever being available in US but only the D2 which is no where near as good as D3. Its great because its funded and cheap, but to buy it as a supplement isnt an option for me as its in a miserly amount and costs an "arm and a leg"


    Scand, your onc sounds like my doc, who is great. I guess they have to "cover their butts". Mine was prepared to check things out further when I asked if I could continue at a 2 week regime. I was quite severely deficient when 1st tested, though not by mainstream standards which some of the mainstream medical fraternity were and are prepared to admit are woefully underestimated. Recently he expressed a little concern coming into summer that I may be already getting it more naturally, but I explained I cant go out in the sun much anyway because of other issues, one of them LE. I told him I will do the math which Ive just done now and is simply 50,000 div by 14 = 1219.5 IU per day. That is still much lower than what some people are taking as a maintenance dose.


    I did a lot of research on vit D3 on the link below, which is a very popular and respected site, but I havent been there for a while. I remember somewhere on this site they said it is VERY hard do overdose on D3, but of course we need to be careful taking all things into account.


    http://www.vitamindcouncil.org/


    Somewhere I also remember reading that docs were ordering the wrong tests, and that we had to make sure it was specifically the D3 test.

  • SchoolCounselor
    SchoolCounselor Member Posts: 452
    edited December 2013


    Thanks Musical for that link. One of the first things my MO put me on when I was diagnosed was Vitamin d. I assume or I will request my levels checked at the end of chemo.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2013


    My pleasure School Counsellor. .


    Theres also a great VitD thread, and I guess it will be somewhere in these alternative forums, but possibly buried. Theres a lot of good info in it, but as with any long thread, its a bit hard to find exact info youre looking for.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2013


    Musical - GREAT! Just wanted to be sure you were getting D3.

  • ruthbru
    ruthbru Member Posts: 57,235
    edited December 2013

    Here is an old post of mine about vitamins. I had gone to a talk by a doctor who is nutrition specialist, and an eleven year breast cancer survivor. Here were some of her tips for staying healthy:

    1. We all know we should eat more fruits & veggies, whole grains, less red meat, processed food etc. so I am not going to go into any of that.

    2. EVERYONE should be taking a multi-vitamin. Make sure it says ‘Complete' on the label. Make sure it contains iodine, Vitamin K, selenium and folic acid along with all the other good stuff. Interesting facts about why multi-vitamins are important:

    * older women with the lowest levels of vitamin B-12 were at the greatest risk for breast cancer

    * taking acid-blocking medications make you less able to absorb B-12

    * she recommends 400 mcg of folic acid a day. It works with the B-12 (studies have found that folates may help to make chemo more effective and decrease side effects)

    * B 6 is important in lowering the risk of breast and colon cancer

    * she recommends 90 mg of vitamin C

    * 30 iu of E

    3. Omega 3.....either eat oily fish twice a week or use fish-oil supplements (make sure it says EPA and DHA approved) 1000 mg a day. It's associated with decreased risk of cancer, heart disease, inflammatory disease, depression and more.

    4. Vitamin D....a big deal.....she recommends getting it tested (should be between 40-50 ng/dL). She recommends 2000 iu a day to maintain a good level. Many, many conditions are associated with low vitamin D; heart attack, cancers, rheumatoid arthritis, muscle weakness, asthma, diabetics, multiple sclerosis etc. etc. etc. There are over 200 different body tissues that have been identified so far that have receptors for the vitamin D hormone and they need it to work properly.

    * adequate Vitamin D levels has been shown to reduce the side effects of taxol based chemotherapy

    * Adequate Vitamin D has shown to reduce the side effects of aromatase inhibitors

    * start with a multi-vitamin, drink milk, eat yogurt (check and make sure it has vitamin D added), and most people will also need a supplement to keep that high of levels

    5. Vitamin K, should get 100 mcg a day. Check your multi-vitamin, not all of them have it added.  Inadequacy leads to an increased risk of various cancers, heart disease, osteoporosis and kidney problems.


  • jojo68
    jojo68 Member Posts: 881
    edited December 2013

    Ruthbu, lots of good info...I do disagree with a little bit of it.

    Whole grains are actually not very good for you, in my opinion and research that I have done...better to eat lots of fresh organic veggies for the fiber.

    I disagree about the multivitamin.  MANY of these brands do not contain adequate amount of supplement levels that we need.  Also, many of the common brands use crappy synthetic vitamins etc etc...Better to take each supplement individually from a very reputable source and at good levels.  I would never take a multi that has iodine in it...I would get my iodine from Lugol's.  I would also like to get a good brand of methyl selenium.  Folic acid is usually synthetic and has actually been shown to cause cancer in high amounts.  Folate is the natural kind that can be beneficial but in limited amounts.


    Best to take a vitamin D that also has vitamin K in it...it's a balancing trick....and we all need more than that recommended amount.

    Milk has lots of lactic acid etc...best to drink raw milk or best yet...raw goat milk...alkaline.

    Best to make own homemade organic kefir instead of pasteurized yogurt.Nerdy

  • Momine
    Momine Member Posts: 7,859
    edited December 2013


    Jojo, in what way are whole grains bad for you?

  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited December 2013


    Your body utilizes vitamins at a molecular/chemical level and cannot recognize a natural vitamin from a synthetic one.

  • jojo68
    jojo68 Member Posts: 881
    edited December 2013

    Like I had said...this is from MY research that I have done about the folic acid/folate controversy...I invite anyone to do their own research and form their own opinions.  We are just 'sharing' info on this thread...

  • jojo68
    jojo68 Member Posts: 881
    edited December 2013

    This is a basic article about whole grains....there is tons of studies out there.  Whole grains destroy your gut and cause leaky gut that destroys your health.  Plus, whole grains are very inflammatory.  Again...just offering my research..please do your own research if you are interested or concerned?

    http://bodyecology.com/articles/top-5-foods-that-damage-your-digestion

  • leggo
    leggo Member Posts: 3,293
    edited December 2013

    I have to disagree with the body not knowing the difference between synthetic and natural vitamins. It most certainly does. Synthetic vitamins are isolates. Only a small amount of isolates are absorbed and even less is utilized in the body. Also, a poor quality isolate can have detrimental effects on the body. Not checking the source of your vitamins and assuming synthetic is as good as natural is an assumption we shouldn't make.

  • jojo68
    jojo68 Member Posts: 881
    edited December 2013

    Agree, Leggo!

    here is another article about whole grains.  I know some of you may not like the author, but he provides a great outline to bridge to other research.

    http://articles.mercola.com/sites/articles/archive/2012/01/21/grains-causing-gut-leaks.aspx

  • Momine
    Momine Member Posts: 7,859
    edited December 2013


    Jojo, OK, so this guy is essentially concerned about gluten. The culprit according to your article is gluten, not "whole grains." There are many whole grains that contain no gluten.


    The "leaky gut" theory is, as far as I know, merely that - a theory. Ditto for the whole alkaline-acid foods theory.

  • jojo68
    jojo68 Member Posts: 881
    edited December 2013

    Momine, I disagree....just my opinion and what I have found in my research.  Again, not here to argue, just share the info we each have.

  • Momine
    Momine Member Posts: 7,859
    edited December 2013


    Jojo, I am not trying to argue either. The article you gave me said that the problem is gluten. I am going by the info you yourself gave. It is simply a fact that many whole grains have no gluten: quinoa, amaranth, rice and probably many more. So, I remain confused as to why we should skip eating whole grains. Even if one accepted the idea that gluten is detrimental to health, there are still many non-gluten grains one could eat.

  • abigail48
    abigail48 Member Posts: 1,699
    edited December 2013


    gary talking again about pomagranits, says study says good for breast cancer, surprises me because they're one of several highly estrogenic foods. he also is talking about sweet wormwood. esp with iron? says can't malarial parasites can't live in the presence of sweet wormwood, also breast cancer cells....I'm continuing to use the combination of cranberries, walnuts, pecans. great in morning oatmeal, sweet without sugar. I grind the combination up in my magic bullit

  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited December 2013


    Kay, have you ever eaten Ethiopian food? Teff is what the injera bread is made with. I can't describe it very well. Injera is like a mildly sourdough spongy crepe. I don't notice a very pronounced "grainy" taste to it.

  • Momine
    Momine Member Posts: 7,859
    edited December 2013


    Kay, I treated myself to a little polenta today, because I was craving some comfort food after being down with the flu for several days. Afterwards, I wondered why it really would actually be so bad. The GI load is intermediate and I use a wholemeal polenta from the health food store.

  • Rdrunner
    Rdrunner Member Posts: 309
    edited December 2013


    There is soooooo much incorrect information on gluten out there. My family is rife with celiac disease so i know a few things about it. If you have a real issue with gluten.. trust me on t his.. you will get very sick, loose weight, get extremely anemic etc.. a biospy of the duodenum is the gold standard. Yes they check antibody levels but these can be falsely raised. While some people may have a sensitivity to wheat.. this is not the same thing as being sensitive to gluten or having celiac disease.

  • Momine
    Momine Member Posts: 7,859
    edited December 2013


    Kay, I suspect that is exactly right. Most people eat way too much sugar and too many refined carbs. Once they become aware of that and cut back, they would typically feel better (maybe even lose a bit of weight). Same goes for the alkaline diet, so-called.


    Just had the rest of the polenta for dinner. It was yummy, sorry ;)

  • Scandophile
    Scandophile Member Posts: 71
    edited December 2013

    I gotta pipe in about the alkaline - acid theory. I gotta say that from personal observation, it has some merit.

    When I first started testing myself back in August this year, I was pretty consistently scoring about 5.8 - 6.2. Now, after being on a much more alkalized diet, I am consistently scoring in the 7.2 - 7.4. It took a little while for the numbers to shift, but they have interestingly enough.

    Its anecdotal, sure, but it has me thinking there is something to it all.


     

  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited December 2013


    I too agree that people feel better on gluten-free because they've reduced the carbs in their diets, not because of the gluten. Fashionable "diets du jour" where people self-diagnose all kinds of things tend to get on my nerves…and I think it does a real disservice to people who are genuinely allergic because it makes other people not take it seriously.

Categories