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General Health Issues Diet and appetite, sleep and fatigue, pain management, exercise, etc.

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  #1  
Old Mon Apr 8, 2013, 11:22 AM
Marlene Marlene is offline
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Complexity of B12

This video is well worth a watch. It's long but please watch the entire video. You may have to pause it come back to it.

Even though it focuses mostly on neurological issues, it applies to blood disorders. B12 deficiency is much more wide spread than we know and it is missed by doctors who rely on just the B12 serum test. The video gave a list of tests to assess B12:

Serum B12
HoloTranscobalamin
Homocysteine
Methylmalonic Acid (MMA)
Unsaturated B12 binding capacity

Some of the things you'll hear in this video are some of the same things people have posted on this site regarding their doctor's attitude to B12. And, it gives you a brief history as to why B12 testing has fallen by the wayside and why B12 deficiency is missed.

Even if this doesn't apply to your specific case, it is well worth watching. I'm sure most will know of someone who could benefit from this knowledge. The one thing that stood out for me was the problem of excess folate masking B12 deficiencies. Especially in pregnant women which can then lead to post pregnancy issues as well as problems for their infant.

http://www.youtube.com/watch?v=BvEiz...ature=youtu.be

Please take the time to watch for you may find some nugget of information that applies to you.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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  #2  
Old Tue Apr 9, 2013, 01:40 PM
Hopeful Hopeful is offline
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Thanks for posting this Marlene! I'm only a quarter way through, but it is excellent.
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52 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. Tried slow cyclosporine taper over 4+ years. Platelets fell, so back on cyclosporine. Trisomy 6 clone in 5% of cells.
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  #3  
Old Wed Apr 10, 2013, 03:47 PM
tom30 tom30 is offline
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The video was interesting thanks for posting... For what's worth... I have these websites bookmarked for B12 info attempting to figure out the best way approach supplementing.

this page has various links and an interesting overview of b vitamins.
http://jdmoyer.com/2011/09/03/b-vita...s-complicated/

this page has various recommendations on B12 and folate
http://forums.phoenixrising.me/index...e-chelation.6/

I never left the b12 tablet under my tongue as long as this site recommends 45 mins but have started to do that I was just chewing them.
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Tom- 59 yrs old, dx-eosinophilic fasciitis 2004, 1 yr prednisone resolves EF- now low counts, HGB has been ok... EF has been associated with MDS along with AA.
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  #4  
Old Thu Apr 11, 2013, 09:26 AM
Marlene Marlene is offline
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Thanks for the links. I'll have to add to the list too. It's apparent, like most things dealing with our bodies, that it's very complex and individualized. The good thing, is that most people can benefit from a basic approach to correct nutrient imbalances.

Regarding B12 absorption....I understand that it's best to do B12 on an empty stomach without any other vitamins in order to maximize absorption. You'll never absorb the full 1000 or 5000 mcg but with doses that large, but you should be able to achieve adequate levels.

I think all of this reinforces the need to address one's overall health. You may need to focus on one or two aspects but you really need to tend to your entire being to maintain balance. I found it interesting that once people start replacing the B12, they need more potassium because the healing process uses it up.

Just be sure to get the full complement of the B vitamins to ensure that the B12 and folate can do what it should.

Thanks again...M
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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  #5  
Old Tue Aug 4, 2015, 02:46 AM
Alyssa W. Alyssa W. is offline
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Thanks for the video!

Hi,

Just wanted to say thank you so much for posting this B12 video. I have had so many of these symptoms, been a vegetarian in the past and have begun taking B12 supplements. Does anyone recommend a good B12 vitamin? Or is a weekly shot better? Excited that this may help me with my dizziness, fatigue, and weakness. Thank you!
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  #6  
Old Tue Aug 4, 2015, 05:36 AM
Cheryl C Cheryl C is offline
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Eggs are a very good source of B12. You only need the equivalent of 1-2 per week. I'm vegetarian and dairy free and don't have any problems with B12.
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Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. On watch and wait since Feb 2012. IVIg 5-weekly. BMB Feb 2014 - no blast transformation. 2018 still stable.
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  #7  
Old Tue Aug 4, 2015, 11:39 AM
tom30 tom30 is offline
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I take one of these a day, my hematologist recommended this dose. I chew them I found no difference in leaving under my tongue. For some undetermined reason the shots had a negative affect on me not with my b12 level which went very high, but I felt like crap. Last time I had my b12 checked it was around 600. That was eating a paleo diet and taking the 1000mg b12 pills for several months.
http://www.amazon.com/Jarrow-Formula...ords=jarrowb12
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Tom- 59 yrs old, dx-eosinophilic fasciitis 2004, 1 yr prednisone resolves EF- now low counts, HGB has been ok... EF has been associated with MDS along with AA.
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  #8  
Old Tue Aug 4, 2015, 10:13 PM
Alyssa W. Alyssa W. is offline
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Thanks!

Thanks Cheryl and Tom, I appreciate your insight. I lost so much weight lately, can't explain why, my dizziness and nausea didn't help. From being mainly a vegetarian, I have decided to eat eggs and small amounts of chicken and beef. Just to see if that would help. I started eating 3 hardboiled eggs a day, not sure if it's too much but they are delicious. I just ordered B12: Metagenics Intrisi B-12 Folate because it was highly recommended & also received another recommendation from this site that I may try as well. I have had some tingly in my hands and feet and not sure what is causing it. But my appetite has increased and really happy I also heard Aloe Vera Juice is great at detoxing your body and building your immunity by drinking 8 oz a day. Aloe1.com was the site I was referred too. If I can help any one please let me know. This has been quite the journey and feel happy to know you all. Alyssa
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  #9  
Old Thu Aug 6, 2015, 12:20 AM
Cheryl C Cheryl C is offline
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Hi Alyssa - Great to hear that you're feeling better and more positive. If you eat a balanced diet you probably may not need to supplement in the future. Foods rich in folate include •asparagus •bran flakes •broccoli •Brussels sprouts •chick peas •dried beans •lentils •spinach.

All the best!
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Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. On watch and wait since Feb 2012. IVIg 5-weekly. BMB Feb 2014 - no blast transformation. 2018 still stable.
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  #10  
Old Sun Aug 9, 2015, 03:34 AM
Alyssa W. Alyssa W. is offline
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Thank you Cheryl, I have good days and bad days. If i touch an ounce of sugar, even if it's in a gluten free Luna Bar, I feel sick. Still weak, light headed and get dizzy when standing. Went to an Internist who basically referred me to four other doctors. Another hematologist, cardiologist, neurologist, and an allergist. Gosh I am really supporting the medical community! I felt so frustrated that I broke down in the Internist's office. The idea of not knowing why I feel so sick, my white blood count being low, and how to help myself can be overwhelming. I have been thinking of everything, I have one silver filling as well as breast implants done 3 years ago. I may take everything out, I am so nervous because if I do and my sickness is still here I will feel even more devastated. Any thoughts? The positive thing I have going is I am becoming closer and closer to God. I know all of this is for my highest good. Thanks again for all of you and your support. Means the world. xo
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  #11  
Old Sun Aug 9, 2015, 07:58 AM
Cheryl C Cheryl C is offline
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Hi Alyssa - don't rush to remove your filling or breast implants. 25 years ago my father-in-law had all his teeth removed thinking it would get rid of a terrible itch he had developed all over his body. It cost a lot of $ but didn't do the trick. He hadn't been eating very well after the death of his wife and when he finally remarried into a vegan family his itch disappeared quite quickly. Give yourself some time on your new regime.

I'm trying to remember whether you've had a bone marrow biopsy and if so what it showed? I assume the internist will check out whether you have the helicobacter virus?

Like you I believe in God and that He doesn't cause disease but that He walks with us through the difficult times in our lives - what a comfort that is!
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Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. On watch and wait since Feb 2012. IVIg 5-weekly. BMB Feb 2014 - no blast transformation. 2018 still stable.
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  #12  
Old Sun Aug 9, 2015, 09:06 PM
Alyssa W. Alyssa W. is offline
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Hi Cheryl,

Thanks for your words. I don't know, I may move forward with my breast implant removal because I am desperate for my health. I did have a bone marrow biopsy and the doctor put me on a wait and watch protocol. My hypo cellular marrow was 10-20%. They don't know why. My RBC 3.53, HGB 10.7, HCT 32.7, MCV 93, MCH 30.3, MCHC 32.7, RDW 12.8; PLT 140, WBC 2.2, NEU 50%, LYM 41%, MON 6%, EOS 2%, BAS 1%.

I really don't know what it means just that many of my blood counts are low.

This overall feeling of joint pain, uneasiness, tingly in feet and hands, dizzy when stand, weak is frustrating. Been eating healthy, lots of vegetables now added meats. Hummus, beans, NO sugar. isn't curing anything but I would not be able to be active without this nutrition bc I think I would collapse. I thank you for everything and hope you are well, you are very kind.

Alyssa
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