DISAPPOINTING RESULTS

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
roxanne
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Re: DISAPPOINTING RESULTS

Post by roxanne »

SusanJ wrote:
roxanne wrote:Hopefully Susan, our MHTFR expert can give me her opinion on this.
Seems it would be worth stopping the B vitamins. I'm finding that just because you have certain snps (like the MTHFR twins), it doesn't mean you need to supplement. You have to go by symptoms. You didn't have high homocysteine before supplementing, which probably means you were doing fine without extra Bs.

When I was taking 800 mcg methylfolate and 1000 mcg B12, I also had the 3-4 AM wakeups and couldn't get back to sleep. I now take half those doses and sleep much better. Increased BP can also happen with too much folate.

So, stop for a while and see if your sleep and other symptoms improve.
Hi Susan: I did stop for a while but my homocysteine unfortunately jumped to 12.7. So this is what I'm doing now. Folate as Metafolin 1000mcg, B12 as Methylcobalamin 1000mcg, Vitamin B6 16mcg, and 75mcg Benfotiamine. This makes up one capsule of a supplement from Pure Encaspsulations called MethylAssist. I am also taking Now Sunflower Lectithin 1 Softgel 1.2 g with Phospgatidyl Choline 180mg, but only 3 or 4 days a week.

Do you think this is a good protocol? Shall I increase The SL to 2 softgels and do it every day? I would like to avoid Creatine as I read it increases Creatinine levels.

If anybody else has an opinion on this, please chime in

Thanks for your responses....
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SusanJ
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Re: DISAPPOINTING RESULTS

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roxanne wrote:Do you think this is a good protocol?
If you're not getting side effects, then try it for a while and recheck. Homocysteine changes rapidly, so you could retest in a month and see.
roxanne
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Re: DISAPPOINTING RESULTS

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SusanJ wrote:
roxanne wrote:Do you think this is a good protocol?
If you're not getting side effects, then try it for a while and recheck. Homocysteine changes rapidly, so you could retest in a month and see.
Thank you Susan: I did not know that homocysteine changes rapidly. I will try it for a month and see.
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SusanJ
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Re: DISAPPOINTING RESULTS

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roxanne wrote:I will try it for a month and see.
Homocysteine is complicated. So many moving parts. If you haven't already looked at the wiki on methylation you might want to work your way through the homocysteine section.

Do you track your food on cronometer or similar site? Sometimes the usual suspects are not enough because your diet doesn't provide you everything you need and you have to add other supplements. Another to look at is riboflavin. Riboflavin is used to make FADS which is a cofactor for MTHFR.

https://wiki.apoe4.info/wiki/Methylation#Riboflavin

Do you eat a lot of animal protein? Or have you increased the amount? Methionine, from animal protein, certainly affects homocysteine levels.

If homocysteine doesn't drop, you might also want to test your folate, B12, B6 and MMA levels. MMA is a measure of how well your body is using B12. Can be helpful in finding the point in your pathway that might be blocked. And follow test instructions closely. For example, you have to stop folate a couple days ahead.

Good luck and let us know how it goes.
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Re: DISAPPOINTING RESULTS

Post by roxanne »

SusanJ wrote:
roxanne wrote:I will try it for a month and see.
Homocysteine is complicated. So many moving parts. If you haven't already looked at the wiki on methylation you might want to work your way through the homocysteine section.

Do you track your food on cronometer or similar site? Sometimes the usual suspects are not enough because your diet doesn't provide you everything you need and you have to add other supplements. Another to look at is riboflavin. Riboflavin is used to make FADS which is a cofactor for MTHFR.

https://wiki.apoe4.info/wiki/Methylation#Riboflavin

Do you eat a lot of animal protein? Or have you increased the amount? Methionine, from animal protein, certainly affects homocysteine levels.

If homocysteine doesn't drop, you might also want to test your folate, B12, B6 and MMA levels. MMA is a measure of how well your body is using B12. Can be helpful in finding the point in your pathway that might be blocked. And follow test instructions closely. For example, you have to stop folate a couple days ahead.

Good luck and let us know how it goes.

Indeed, it's compicated. I work with an FM practitioner but I actually know more than she does.
I have checked my B12, B6 and folate I levels and all are under the levels suggested by Bredesen.
I haven't checked MMA levels, which I will do if it does not move.

I do eat, eggs (4 a week), chicken and seafood, but in small quantities. I will restudy the WIKI on methylation maybe I can learn something new. When I was doing cronometer all levels were fine except for potassium, but I didn't think that was an issue.

I will report my results as soon as I test.

Thanks again for your suggestions.
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Re: DISAPPOINTING RESULTS

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Re A1c test, once a doctor sent my blood from the same draw to two labs for A1c (part of different panels), and the results were significantly different.
ApoE 3/4 > Thanks in advance for any responses made to my posts.
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Re: DISAPPOINTING RESULTS

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circular wrote:Re A1c test, once a doctor sent my blood from the same draw to two labs for A1c (part of different panels), and the results were significantly different.
Hi Circ: That is good to know because frankly, I'm mystified. It would be interesting to do an experiment and see what happens. I was so upset by that high A1C, especially when you are working so hard and you get exactly the opposite results you are expecting :?:
circular
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Re: DISAPPOINTING RESULTS

Post by circular »

roxanne wrote:
circular wrote:Re A1c test, once a doctor sent my blood from the same draw to two labs for A1c (part of different panels), and the results were significantly different.
Hi Circ: That is good to know because frankly, I'm mystified. It would be interesting to do an experiment and see what happens. I was so upset by that high A1C, especially when you are working so hard and you get exactly the opposite results you are expecting :?:
I'm sorry it's been so frustrating to see your results, and I think many of us here understand. It seems there are few people who can simply implement a program and have it all go swimmingly. I think most of us have to tweak and learn and tweak and learn, with some areas seeming to work better than others.

I remember Dr. Bredesen once saying that people with cognitive issues improved even when they couldn't implement all the items on the protocol, and that was in early days. You are moving the dial a long way in the right direction. Respect that your body will likely have its own idiosyncrasies, and see the learning curve as a fantastic way to keep your mind expanding and new neural connections forming :D
ApoE 3/4 > Thanks in advance for any responses made to my posts.
roxanne
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Re: DISAPPOINTING RESULTS

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circular wrote:
roxanne wrote:
circular wrote:Re A1c test, once a doctor sent my blood from the same draw to two labs for A1c (part of different panels), and the results were significantly different.
Hi Circ: That is good to know because frankly, I'm mystified. It would be interesting to do an experiment and see what happens. I was so upset by that high A1C, especially when you are working so hard and you get exactly the opposite results you are expecting :?:
I'm sorry it's been so frustrating to see your results, and I think many of us here understand. It seems there are few people who can simply implement a program and have it all go swimmingly. I think most of us have to tweak and learn and tweak and learn, with some areas seeming to work better than others.

I remember Dr. Bredesen once saying that people with cognitive issues improved even when they couldn't implement all the items on the protocol, and that was in early days. You are moving the dial a long way in the right direction. Respect that your body will likely have its own idiosyncrasies, and see the learning curve as a fantastic way to keep your mind expanding and new neural connections forming :D
That is very uplifting, thank you. I can "feel" the new neural connections forming, lol . It's good to see things from a different perspective. In the meantime, I'll keep tweaking.
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Re: DISAPPOINTING RESULTS

Post by Hboroughs »

@roxanne - I absolutely have increased blood glucose with progesterone use. I must balance with estrogen in order to control the issue. With more estrogen, I not only feel better (better sleep, less anxiety/panic) but my blood sugar comes down every time. So the ratio of estrogen to progesterone is critical for my glucose and symptoms. The compounding pharmacist did not even know about the fact that progesterone can increase blood sugar!
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