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 » Wed Jan 31, 2018 6:10 pm

250 mcg isnt brutal, but can't hurt to get a bigger picture before next steps. b vits don't occur in isolation in nature!

q: do you have serum ferritin in any of the old bloodwork? number one suspect re fatigue. particularly in women. low red meat diet suspect if other potent natural sources are also avoided (or even fortified sources - example, wheat flour).

serm fe target: 80-100 ng/ml

re supplement list, i'm an essential nutrient fan first. nutrient dense whole food sources before manufactured supplements. for anything the body is meant to synthesize on its own, support the fundamental nutritional chemistry first and foremost. supplementing things the body is supposed to make, is a crutch. that last is more my opinion than an evidence based statement.
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

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

Post by dano » Wed Jan 31, 2018 7:02 pm

I will ask tomorrow....
we had this written down from 2016 - hemoglobin level 1.29,
but maybe they will have fe on file...not sure if they checked it today either...
we just recently cut the red meat down and fatique has been ongoing...
will let you know when we get results...thx

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

Post by jimmylegs » Thu Feb 01, 2018 9:30 am

ah more good info.

hemoglobin reference ranges
https://www.mayoclinic.org/tests-proced ... c-20385075

For men, 13.5 to 17.5 grams per deciliter
For women, 12.0 to 15.5 grams per deciliter

klenner suggests min hemoglobin 13 g/dl for pwms, which i'll assume in your lab's terms means 1.3 g/l
ie close, but could be better off closer to the upper end of the normal range.

fatigue likely multifactorial. reduced iron intake not likely to help mind you!

related
http://nutrition.ucdavis.edu/content/in ... anemia.pdf
What other nutritional conditions can cause anemia (low hemoglobin levels)?
• Deficiencies of other essential nutrients such as vitamins A, C, and B12, folic acid, thiamine, and
pyridoxine can also cause anemia by interfering with the formation of hemoglobin.
• Adequate copper intake is needed for the transport of iron throughout the body. A copper
deficiency could thus result in anemia in the body.
• A riboflavin deficiency, seen most frequently in alcoholics, can contribute to poor iron absorption
and utilization, and to a decrease in the oxygen-carrying capacity of red blood cells.
• A vitamin E deficiency can impair the integrity of the red blood cell membrane and lead to
hemolytic anemia.

fun fun fun all the interactions!!
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

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

Post by dano » Thu Feb 01, 2018 3:14 pm

thanks for info on the hemoglobin, still waiting on rest of results....

have you seen many with MS having a deficiency in a mineral/s
that was associated with fatigue?

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

Post by jimmylegs » Thu Feb 01, 2018 5:13 pm

hi usually magnesium is a suspect mineral where ms patients are concerned. because mag is involved with so many different processes, low levels can manifest in a wide variety of ways. many of the potential symptoms are familiar to those dealing with ms. one is fatigue. the body needs magnesium to transport ATP, the body's 'energy currency'.

looking once more at the list of nutrients contributing to healthy hemoglobin status, the vitamins are nearly line for line a match for the klenner protocol for ms. an old regimen, and far from perfect,but did me a world of good as i applied it, in a matter of days.
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

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

Post by NHE » Thu Feb 01, 2018 5:29 pm

dano wrote:That video was old and just a bit depressing and I don't believe that is the way it has to be....
I am glad you shared it, but that video actually made me a bit angry so I only listen to 5 mins of it and skimmed thru it.
I did 10 years of Avonex. I still wound up SPMS 17 years after my diagnosis.
dano wrote:I believe this can be beaten and there is lots that can be done to fight it...
example....
The last time my wife had a relapse, I pulled out an old UVB sun lamp that my parents had and we stopped the relapse from progressing in 2 days. She was heading into an event that would have normally required Solumedrol. We used the lamp 20 mins a side and twice a day..The lamp was 3 ft away....There are lots of the sun lamps for sale on eBay....search for vintage sunlamp.
We later added more vitamin D to the protocol, but is it the vitamin D that helped or was it the actual UVB on her skin. (UVB does kill bacteria etc)
Sure. UV exposure not only produces vitamin D3, but also releases NO causing vasodilation helping improve circulation.

http://www.thisisms.com/forum/chronic-c ... ml#p224803

Regarding vitamin D3...

Pierrot-Deseilligny et al. 2012 reported that every 10 nmol/L (4.0 ng/mL) increase in 25-OH-D level, up to 110 nmol/L, was associated with a reduction in the relapse incidence rate of 13.7%.

http://www.ncbi.nlm.nih.gov/pubmed/22783368

A mere 30 nmol/L increase in 25-hydroxy vitamin D3 puts it in the efficacy range of interferon beta1a with a 41% reduction in relapses. The side effects are nonexistent and the cost is spit in a hurricane in comparison.

Note: 110 nmol/L = 44.1 ng/mL. Divide by 2.496 to convert nmol/L to ng/mL.

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

Post by dano » Fri Feb 02, 2018 9:27 am

Regarding vitamin D3...

Pierrot-Deseilligny et al. 2012 reported that every 10 nmol/L (4.0 ng/mL) increase in 25-OH-D level, up to 110 nmol/L, was associated with a reduction in the relapse incidence rate of 13.7%.
That is a great point.....
She started taking this drug and is now scared to go off it.... She had two minor relapses in 2015 and 2016 and
was only taking 2000 IU for D3...

Have you changed your diet at all ?

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

Post by jimmylegs » Fri Feb 02, 2018 11:17 am

dropping in to note that upping d3 dose is not the be all and end all. not every person has the same serum response to a given d3 dose. it can depend on cofactor intake and status - with magnesium being one particularly relevant piece of the puzzle, as noted earlier. and this circles us right back around to possible minerals assoc w fatigue, with magnesium being a front and centre one for ms patients in general.

the drugs do not address the known but non-lucrative nutritional problems associated with ms. well actually sometimes drugs *do* actually work *because* they improve nutrient status, but that's not the most cost effective or ethical way to achieve health, in my view anyway!
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

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

Post by dano » Sat Feb 03, 2018 11:11 am

well, we are not going to be able to figure it out until we get the results back
so, see what happens on Monday....

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

Post by jimmylegs » Sat Feb 03, 2018 12:29 pm

looking forward to it
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

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

Post by dano » Mon Feb 05, 2018 9:30 am

got some of the result.....hopefully getting zinc and B12 later on today
the Dr.s office said they are in normal ranges, in case you think the decimal place doesn't appear to be in right place for Vit D...


mg - Magnesium .87
Folate 27.1
Vit D 1.77
Fe - Iron -268
zn -zinc ??
Vit B12 - ??

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

Post by NHE » Tue Feb 06, 2018 12:42 am

dano wrote:got some of the result.....hopefully getting zinc and B12 later on today
the Dr.s office said they are in normal ranges, in case you think the decimal place doesn't appear to be in right place for Vit D...


mg - Magnesium .87
Folate 27.1
Vit D 1.77
Fe - Iron -268
zn -zinc ??
Vit B12 - ??
What are the units on these test values?

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

Post by jimmylegs » Tue Feb 06, 2018 3:27 am

units definitely key. eg decimal point moves west by one place if the units denominator changes from dl to L

until we have units to work with, results tentatively appear more consistent with ms patient averages than those seen in healthy controls. ie low vs mid / high normal. probably some very practical action items pending.

looking forward to the zinc and b12 numbers (with units of course!)
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

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

Post by dano » Tue Feb 06, 2018 5:10 am

having problems getting the info....not sure why vit D was 1.77, so will ask today what the units were for that one....and I
will confirm the rest...

mg - Magnesium .87 mmol/L
Folate 27.1 nmol/L
Vit D 1.77 -> or 177 nmol/L?
Fe - Iron -268 ug/L

zn -zinc coming today ??
Vit B12 - coming today ??

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

Post by dano » Tue Feb 06, 2018 2:21 pm

This is all I can get for now...
they would only say for B12, that maintaining a dose of 2500 mcg/day is okay....

mg - Magnesium .87 mmol/L
Folate 27.1 nmol/L
Vit D 1.77 -> or 177 nmol/L?
Fe - Iron -268 ug/L

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