When to go off REBIF - went Gluten Free and Colitis healed

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jimmylegs
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Re: When to go off REBIF - went Gluten Free and Colitis heal

Post by jimmylegs » Sun Dec 23, 2018 12:32 pm

will be interesting to see what emerges for sure. since there are clearly problems with either deficit or excess (and the definition thereof), will be interesting to see if there is a solid number for healthy controls. i just remember serum mn being a pain in the butt to research.

that said - some patients need to guard against deficit:
  • Association of Serum Manganese Levels with Alzheimer’s Disease and Mild Cognitive Impairment: A Systematic Review and Meta-Analysis
    https://www.mdpi.com/2072-6643/9/3/231/htm
    "Our findings show that the serum Mn levels are lower in AD patients, and Mn deficiency may be a risk factor for AD."
genetic mutation can lead to both mn excess and deficiency (both SLC39A14 and SLC39A8 are zinc transporters)
there's an interferon/immune system connection:
also, zinc transporter gene expression varies in zinc deficit.

maybe encouraging??:
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dano
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Re: When to go off REBIF - went Gluten Free and Colitis heal

Post by dano » Sun Dec 23, 2018 4:29 pm

Saw one study with increases in manganese that increased ferritin, but not much info on it and it was in a manganese mine, so not well water...

I had my zinc tested for first time and it was 12.2 and copper was 12.5 and I have been taking 50mg of zinc per day for at least 3 months...
Now I have missed a day here and there, but I thought mine would be higher than 12.2, so it appears that something is blocking my absorption as well...manganese???
looks like I will have to watch the copper while continuing the zinc....
will see what manganese comes in at....
We should know soon...

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Re: When to go off REBIF - went Gluten Free and Colitis heal

Post by jimmylegs » Sun Dec 23, 2018 6:25 pm

well if there's a metallic lining of any kind here, at least your 1.02 copper zinc ratio is really not too shabby. still would be better if the numbers were flipped, ie ratio 0.98. and as you know, better still if both separate values were higher.

if you can find it, solaray makes a decent blended zinc:copper product (50mg:2mg) to help defend against copper depletion. i don't have anything particularly informative to say about the zinc amino acid chelate that they use, however.

genestra's zinc picolinate is 30mg. picolinate is supposed to be superior for absorption, but as genestra doesn't blend their fancy zinc with any copper, you'd be looking for a separate 1 or 2mg copper product to provide a safe balance.

from a supplement perspective, it makes lots of sense for zinc to be low in the context of high iron. i don't know how long high iron in groundwater could be expected to affect serum ferritin after correction though. haven't had any success trying to find a related article - just studies saying yes, serum ferritin goes up when groundwater iron is high.

i also don't know if there could be anything applicable in this article:
Management of Elevated Serum Ferritin Levels (2008)
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3093720/

will be interesting to get a look at the manganese piece of the puzzle for sure.
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Re: When to go off REBIF - went Gluten Free and Colitis heal

Post by jimmylegs » Sun Dec 23, 2018 6:43 pm

one other thing, talk to me about typical intakes of foods rich in vit c?
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Re: When to go off REBIF - went Gluten Free and Colitis heal

Post by dano » Sun Dec 23, 2018 7:16 pm

supposedly the iron has been removed from the well water for 2 years, so it shouldn't be affecting ferritin levels.
so only high levels manganese are left behind...
It is harder to remove manganese than iron and since there are no MAC level for manganese
we were told its okay at any level by the testing people....grrrrrr

actually my ferritin levels were lower when there was iron in the water....
I removed the iron from the water and ferritin levels went up with just manganese left in water.

so its either manganese inflammation issue or one of the other issues in the previous link...fatty liver? 8O

urinalysis tests have been okay, but will have further testing done.

will request your iron panel and test for C-reactive protein and liver and kidney panel and ??

you are right, not much info on manganese...

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Re: When to go off REBIF - went Gluten Free and Colitis heal

Post by jimmylegs » Sun Dec 23, 2018 8:11 pm

mea culpa. i hadnt dialed in the timing. i'll have a look at the fatty liver angle.
fwiw i am best at interpreting a narrow range of serum nutrient levels. can't rattle off targets for anything else off the top of my head. outside essential nutrients with particular relevance to ms patients, by and large i wouldn't be able to do any better than 'normal' or 'not normal'.
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Re: When to go off REBIF - went Gluten Free and Colitis heal

Post by dano » Mon Dec 24, 2018 6:00 am

no problem...
we got off topic here ... I just picked the liver, since no known problems and everyone is working towards it these days...
although weight is good and have always eaten well even before going sugar, dairy and gluten free,,,
I will see what manganese results tell us...

My wife is feeling better, dizzy spells and very minor optic neuritis gone....
so changing the following below has been key...

1: ** the short term change in zinc to 4x25mg per day without food to quickly boost numbers that surprising dropped to 12.7 from 16.7 in less than 2 months
2: ** using the UVB sunlamp (this has proven a dozen times to be a very safe and effective way to eliminate relapses)
3: increased vit D from 4000 to 5000 iu
4: oysters and taking tumeric supplements

This is in addition to normal routine and supplements...

Another thing I noticed is that a zinc level over 14 is enough to keep problems in check for my wife.
She is still working towards topping 18, but so far it has been a roller coaster ride. I think taking 2x25mg per day will improve
this scenario.
thx

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Re: When to go off REBIF - went Gluten Free and Colitis heal

Post by jimmylegs » Mon Dec 24, 2018 9:16 am

looks manageable, as long as the magnesium can keep up with the d3 of course.
re short term 4x25mg zinc followed by lower dose later, do please keep in mind that 50/d is still a therapeutic intake and the upper limit for zinc from supplements long term is 40mg/d. obvi such rules don't take every person's unique situation into account but it's worth at least trying to adhere to guidelines. maybe i would say something different if i knew the detailed rationale for the 40mg max!
hope it all goes well :)
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Re: When to go off REBIF - went Gluten Free and Colitis heal

Post by jimmylegs » Mon Dec 24, 2018 11:13 am

perhaps of interest:

Manganese, copper, and zinc in cerebrospinal fluid from patients with multiple sclerosis (2003)
https://link.springer.com/article/10.1385/BTER:93:1-3:1

"Manganese levels (mean±SEM) were significantly decreased in the CSF of MS patients (1.07±0.13 µg/L, ICP-MS; 1.08±0.11 µg/L, AAS) compared to the levels in the control group (1.78±0.26 µg/L, ICP-MS; 1.51±0.17 µg/L, AAS). Copper levels were significantly elevated in the CSF of MS patients (10.90±1.11 µg/L; ICP-MS, 11.53±0.83 µg/L,
AAS) compared to the levels in the control group (8.67±0.49 µg/L, ICP-MS; 9.10±0.62 µg/L, AAS). ... There were no significant differences in Zn levels in the CSF of MS and control patients (see Fig. 5) (19.0±1.99 µg/L for patients and 23.5±3.15 µg/L for controls)."
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Re: When to go off REBIF - went Gluten Free and Colitis heal

Post by dano » Wed Dec 26, 2018 8:08 am

Yes, interesting ...
adding manganese on this end doesn't appear to have helped....

Also interesting that there was no difference in cerebrospinal fluid zinc levels, when it appears that serum zinc appears
lower in MS patients.

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Re: When to go off REBIF - went Gluten Free and Colitis heal

Post by jimmylegs » Wed Dec 26, 2018 9:05 am

to my recollection i've seen no studies evaluating treatment effects on csf mn status, and i don't think i'll ever have it tested personally. still interesting to see the patient and control clusters.
i noted re csf zinc the difference - if not *significant* per se - for the given sample size (ie 19.0±1.99 µg/L for patients and 23.5±3.15 µg/L for controls)
considered alongside the significant copper difference, still of interest (although i also haven't seen info on optimal copper zinc ratios in csf the way these exist for serum measures)
take control of your own health
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dano
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Re: When to go off REBIF - went Gluten Free and Colitis heal

Post by dano » Tue Jan 01, 2019 7:39 am

here are manganese results.....

Manganese (Plasma) 9.5 nmol/L ----- range --8.0 - 20.7 nmol/L

so, this doesn't make any sense being on low side, but at least it isn't above 20 nmol/L ...

it doesn't appear that manganese is absorbed very well from higher levels in water.....

my first thought when I saw the number was a possible error in testing.... :?

So, at this point after testing we are now filtering out all of the manganese, so now I am wondering if that is a good
idea.....grrrrr

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Re: When to go off REBIF - went Gluten Free and Colitis heal

Post by jimmylegs » Tue Jan 01, 2019 8:10 am

hi and happy new year.

back to examining interactions between ferritin and manganese...

Manganese deficiency and toxicity: Are high or low dietary amounts of manganese cause for concern?
https://iubmb.onlinelibrary.wiley.com/d ... 5520100102

Low iron stores are related to higher blood concentrations of manganese, cobalt and cadmium
https://www.sciencedirect.com/science/a ... 5110000484

i don't have time to dig in on these or other studies unfortunately!
take control of your own health
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dano
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Re: When to go off REBIF - went Gluten Free and Colitis heal

Post by dano » Tue Jan 01, 2019 8:50 am

Happy New Year!!!

thanks...

it leads back to why the high iron / ferritin levels for both of us.....
so, we are still planning on looking into that...

I just wanted to follow up with manganese results, because again it shows the complicated balance with the minerals...

I thought it was going to be high and it comes back too low....

thanks again.... :smile:

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