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 Mar 21, 2018 3:56 pm

OK now we have news we can use!!!

short story - zinc only for one month, max 100mg per day. then wash out for a week, then if you can retest all three.

long story (read the fine print!):

zinc status low normal, typical for ms. aim for 18.5 umol/l. try high dosing for 1 month then retest. note: always take zinc with food. no more than 50 mg at a time. no more than 100 mg per day. important: after a month drop back to max 40 mg per day. if you can, do a washout for a week or so once the month of zinc is up, then retest.

serum uric acid is low normal, just above the 194 umol/l average for ms patients. well below the 230 umol/l average for ms patients in remission. still further below the 290-300 umol/l ballpark for healthy controls. try adding zinc as above, then f you can, retest. aim for that 290-300 umol/l serum ua sweet spot.

serum copper status is high. not typical for ms. NO WORRIES supplementing zinc in this scenario. in the short term ie one month of tweaking zinc status, i would not even worry about finding a zinc supplement containing copper. later on, if supplementing zinc over the long term, absolutely important to safeguard against copper depletion.

serum copper zinc ratio looks pretty scary as of this set of results. will be great to see this ratio knocked back into line with zinc around 18.5 and copper around 17 umol/l. that would give you a nice copper zinc ratio of close to 1.1. right now, 0.64. yikes.

again, after a month of zinc, retest serum copper.
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Re: When to go off REBIF - went Gluten Free and Colitis heal

Post by dano » Wed Mar 21, 2018 4:32 pm

okay great.....
Thanks for input....
Its going to be difficult to get these tested again in a month....or maybe even two months....
but will see what we can do....
any way to do zinc at the 40mg and then test in a few month?
It may be better for me to know a little more to explain why and what we are trying to achieve....or not ...lol

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

Post by jimmylegs » Wed Mar 21, 2018 5:01 pm

if you can't test in a month, you could still do a higher dose plain zinc for one month max, let's say 50 mg daily to be on the safe side.
then drop to max 40 mg daily blended copper zinc product, and then retest all three things whenever you next have the opportunity.

might also be an idea to limit high copper foods for a while.

the objective is pretty basic. make the blood match what we observe in average healthy individuals, regardless of flawed reference ranges. currently everything measured is sitting in the 'sick' part of the 'normal' range. (copper is the closest to being ok)

oh that reminds me were these levels done fasting, or no. and, what time of day was the blood taken?
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Re: When to go off REBIF - went Gluten Free and Colitis heal

Post by dano » Wed Mar 21, 2018 6:32 pm

wasn't an official fast, but she probably only had a coffee and test was done at 12PM and then ate.

so, high normal is a good enough explanation.....That's what I said before, so will repeat.

was looking at oral health as well.... the oral spirochetes are an interesting aspect....Was also looking on youtube at lyme spirochetes in blood and viewed under a microscope and just wondering if and how they may be tied together..
was interested enough to order a microscope and going to check to see if these are present as well. Can also take a look at white and red blood cells to see if they look healthy.
The oral spirochetes associated with gum disease are pretty scary .....can also be associated with heart disease...
One guy was checking for lyme spirochetes in the blood of someone with MS....I went hmmmm...won't hurt to take a look...
The oral and lyme spirochetes look exactly the same...
If you look at at some of these videos, it really makes you think ....
It may be a bit off topic, but then again it may not be....

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

Post by jimmylegs » Wed Mar 21, 2018 6:46 pm

ok so you know for next time, coffee messes with uric acid results. if memory serves it temporarily pushes the level higher than the real background status.

fasting serum zinc in the morning is the highest level of the day, so in late evening that low normal 12 umol/l would likely be lower still.

i don't know any funkiness of that sort for copper

fraid i can't really comment on spirochetes! and i have no patience for videos by and large. except netflix hehehe.
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Re: When to go off REBIF - went Gluten Free and Colitis heal

Post by dano » Wed Mar 21, 2018 7:01 pm

okay great.....thx

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

Post by dano » Fri Dec 21, 2018 11:43 am

Hey..
Its been a while trying to get everything in order, but here is an update...

My wife couldn't tolerate REBIF any longer, so she went off of it in June 2018....

We got zinc levels up over 14 and then 16, but it keeps dropping back to 12.7 area while taking
50 mg/day...
Her last test was 2 weeks ago and zinc dropped to 12.7 from 16.7 in Oct.
Her Zinc was at 12.1 in Mar 2018 before even starting supplements.

Her ferritin was high in Jan 2018 and I am wondering if this is causing an absorption problem.

Jan 2018 - Ferritin - 268 ug/L ( will be getting this tested again in next few weeks)

Mar 2018 - Zinc 12.1 umol/L low (before Zinc supplements)
Started Zinc in May

Jun 2018 - Zinc 14.1 umol/L - Higher
Jun 2018 - Copper 18.9 umol/L - High

July 2018 - Zinc 11.3 umol/L - Lower
July 2018 - Copper 18.9 umol/L -Same

Oct 2018 - Zinc 16.7 umol/L -up
Oct 2018 - Copper 17.9 umol/L - down

Dec 2018 - Zinc 12.7 umol/L -down
Dec 2018 - Copper 20.2 umol/L -up

Oct 2018 - Hemoglobin - 1.37 g/l
Oct 2018 - Uric Acid - 209 umol/L

This is not the best time of year to have zinc levels dropping, so wondering if there are any thoughts...
She had some dizzy spells which could suggest the start of a relapse. The sun lamp is so far providing relief of these symptoms, which she has had success with a number of times before. (especially when zinc levels have been low and while still on REBIF).

She is having zinc with meals and she will be taking 25mg twice a day, instead of 50mg once a day with a meal.
She did take 50 mg twice a day this week for 4 days, but will be back on 50mg tomorrow. (she just isn't absorbing it)
Also started having oysters more frequently....
She had a followup colonoscopy in Oct 2018 and they confirmed (to their amazement) that the colitis was totally healed, so gastro problems are not causing the absorption problem.

She has been taking 4000 iu vit D, but we increased it to 5000 until this passes.
Her levels have been pretty consistent with the level below all year.
Dec 2018 -Vit D3 179 nmol/l -

any thoughts or ideas welcome....
thx

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

Post by jimmylegs » Fri Dec 21, 2018 12:29 pm

what a great set of info. so glad to hear that the colitis is healed, and verified via colonoscopy.

high ferritin is a bit of a question mark. would need a sense of the reason it might have been high, before i could speculate on whether it could be implicated in a low normal zinc scenario. on the flip side i would certainly expect high supplemental zinc intake to bring elevated serum ferritin levels down over time.

from this dataset, october looks the best in terms of zinc and copper (ideally - as mentioned earlier this year - zinc would actually be a bit higher than copper, but this instance looks like the closest she got)
hemoglobin looks decent at that time, uric acid on the low side though, even with that reasonable zinc number. something to ponder.

in the meantime, test questions:
1. are these SERUM or PLASMA zinc? (over the course of this past year i've asked for a serum test and plasma results have come back).
2. either way, what is the local lab's given reference range?
3. also can i inquire re the usual testing process. have the samples been consistently taken at any particular time of day? fasting, or no?

re supplemental intake, 25mg twice a day sounds good. two more questions re absorption:
4. what specific chemical form of zinc is used?
5. what kind of foods/beverages are typically paired with supplemental zinc intake? (i mentioned above it should be taken with food - this point was about prevent nausea but if things are being a pain, we can dig in a bit further.

also as above, i'm usually the first person to hypocritcally plug disgusting oysters ;) to help boost zinc. however, given the ongoing and as yet unsuccessful balancing act, here are some zinc and copper numbers in foods to consider: https://bit.ly/2T35l9S

maybe some choices with a higher zinc to copper ratio per serving (eg lamb is roughly 66 zn:1 cu, vs oysters 13:1, etc) could help strike the balance a bit better. i will be interested to read your responses/thoughts.
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Re: When to go off REBIF - went Gluten Free and Colitis heal

Post by dano » Fri Dec 21, 2018 8:35 pm

thx...here are some answers
1. are these SERUM or PLASMA zinc?
I thought these were serum zinc
2. either way, what is the local lab's given reference range?
Zinc 12.7 umol/L
Reference Range:
===============
Normal/Non-Exposed: 8.7 - 19.1 umol/L


3. also can i inquire re the usual testing process. have the samples been consistently taken at any particular time of day? fasting, or no?

No fasting and early afternoon....

re supplemental intake, 25mg twice a day sounds good. two more questions re absorption:
4. what specific chemical form of zinc is used?
Chelated Gluconate - Natures Bounty --This is one thing that I was also wondering about...She has been taking this since Sept, but may have been taking Jamieson Gluconate 50mg in Jun to Sept but had same problems
5. what kind of foods/beverages are typically paired with supplemental zinc intake? (i mentioned above it should be taken with food - this point was about prevent nausea but if things are being a pain, we can dig in a bit further.
usually after a protein smoothy - 11-1130AM ish

I am also investigating our well drinking water... The iron appears to be filtered out from the professional testing numbers we got back, but manganese is more difficult to remove and it may be a problem...There are no MAC guidelines in Canada for manganese, but there are in Sweden and the USA at 300 ug/L and the WHO (World Health Organization) recently reduced the maximum allowable concentrations from 500 ug/L to 400 ug/L
Ours is at 389 ug/L, so less than WHO, but higher than USA and Sweden....but we also use a Brita filter, so it could be lower than 389 ug/L. We now use a Zerowater filter until we figure out whats going on and if we need to add further filtration. A whole other topic...
Since Canada is sitting on the fence with the MAC levels, the people who do the testing legally can't flag higher concentrations, so most people don't even look at it or even consider the higher numbers as a potential problem. It has taken me two years to figure this out as a potential problem...grrr
I had serum manganese also tested on blood to see if this should be investigated further. (it takes a few weeks extra for results, but I should know soon.)
thx...

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

Post by jimmylegs » Sat Dec 22, 2018 4:34 am

the range looks like a serum range i think. plasma ranges are more like 7-14 umol/l

re test info, for zinc that means you're getting a less than best case scenario on test day, the rest of that 24 hour period levels are probably better. morning fasting tells you the best case scenario for zinc for any given day. i don't know anything about circadian rhythm for copper though, if any.

re chemical form, ever tried zinc picolinate? i'm trying it for the first time. brand is genestra. it's been on my radar for good absorption for years but i only saw it on the shelf at the store for the first time this year. haven't had bloodwork done yet to see if it's made an improvement on the last stuff.

zinc absorption should be decent with protein in the mix. could try giving the zinc a few mins on its own before, then follow with the smoothie. also 25mg at one time on its own might not even cause any nausea side effect. could try one each day with the smoothie, plus a secomd away from food altogether and only add a snack if required to settle the stomach.

edit: found this since writing the above (alzheimer's context)
  • "... a zinc acetate salt ... to be given three times a day in 50 mg doses ... had to be separated from food in order to have the desired effect in the intestine. It turned out that up to 50% of patients had some gastric discomfort ... The problem was that the zinc capsules dissolved in one spot in the empty stomach, releasing all the zinc salt in that location, causing irritation in many patients.
    ... slow release of zinc ... caused no gastric intolerance... with around-the-clock elevation of serum zinc."
that's heavily edited since i share not to plug the specific products, only to note the authors' experience re required daily dosage, the effect of separating zinc intake from food, plus round-the-clock intake. in lieu of a slow release form, could try one month of 4x25mg, see if those are tolerated nausea-free without adding food to the mix. hopefully that and potentially some diet mods could help bring the copper zinc levels and ratio into line.

had the well water been a suspect where high ferritin was concerned?
in recent months i've spent more time on mn deficit than on toxicity but upon searching i see this which you've likely already seen yourself:

Dietary Standards for Manganese: Overlap between Nutritional and Toxicological Studies (1998)
https://academic.oup.com/jn/article/128/2/368S/4724002

this may or may not be of interest. last year i took a look at serum manganese levels in context of lyme disease:
http://www.thisisms.com/forum/introduct ... ml#p251014
take control of your own health
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Re: When to go off REBIF - went Gluten Free and Colitis heal

Post by dano » Sat Dec 22, 2018 2:24 pm

My wife really doesn't have a problem with nausea. She was just taking it with food because, well, I am really not sure....
So taking 4x25mg for a month would be better than 2x50mg as she did for the last 4 days.
So good idea, I think she will go with that for a bit and see how it goes....


The ferritin levels for my wife have been high and mine are over the top at 444 ug/L ....see below
Apr 2015 340
Sep 2015 365
Jul 2016 266 - filtration added and iron levels in drinking water dropped
Mar 2018 412 - but ferritin higher
Dec 2018 444 - and still higher

I had the well water checked (2016) and I added filtration for iron which took it from 389 ug/L to less than 7 ug/L, so it should be okay. I checked with the testing people to make sure it tested for dissolved iron and manganese solids.
Manganese was 431 ug/L and was at 397 ug/L after filtration (not 389 as previously stated)

so as far as ferritin goes, my numbers are higher when they should be lower if the iron in the well water was a problem....
My wife as a req for ferritin that will be done in Jan...

I have read (mayoclinic.org) that ferritin levels can be okay up to 500 ug/L for men, so not sure .....

The testing people and filtration companies say the water is great (TDS 240) and we don't need to do anything more, but we will see what the serum manganese levels come in at.

It doesn't appear that zinc is being negatively affected by the iron or manganese, but I did read that taking B6 vitamins could improve the absorption of zinc by 1.5 times.
Have you heard this? thx

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

Post by jimmylegs » Sat Dec 22, 2018 4:23 pm

lucky lady. here's hoping the 4x25mg approach helps.
it's a little frustrating to have read so many reports of *accidental* copper deficiency secondary to zinc excess, and then have difficulty getting it to happen on purpose!?!

those ferritin levels are certainly on the high side. i like mine around the 80-90 range, based on stats in the literature (and in preference to past levels in the 20 ballpark).

so many possible reasons for elevated ferritin. there was another member here whom i'd asked for ferritin to make sure status was okay before starting in on a zinc regimen. came back, i think it was 2000!

in your SO's case, the zinc should help make a dent in the ferritin numbers too, not just the copper.
the listed levels are all yours though yes? related: https://www.bmj.com/content/351/bmj.h3692 from that, i note in particular that unexplained levels above 1000 need more investigation. so i won't ask if you've had an iron panel done etc ;)

the literature suggests that dietary iron and zinc don't interfere with each other. even when it's something like bread made with iron fortified flour. it's with the isolated supplement forms that the problems crop up apparently.

re zinc and b6, i don't think i'd heard the 1.5x but recently a new member said they were on a zinc b6 combo, 2 pills per day which was delivering 250mg of b6 altogether. vitamin b6 supplements at intakes exceeding 100mg per day can result in toxicity/neuropathy. docs didn't seem to think the high dose was an issue, so may be a short term means-to-an-end strategy. for longer term maintenance, healthy dietary B6 options could include: http://www.whfoods.com/genpage.php?tnam ... #foodchart
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 Dec 22, 2018 6:00 pm

thanks...
will let you know how the 4x25 zinc works out....
and if anything interesting with manganese pops up....
good idea on the iron panel....like you said, they are ignoring it as long as it is < 1000 ug/l

It wasn't until I wrote my ferritin dates and numbers out today, that it doesn't appear to be associated with iron overload unless I am missing or overlooking something, but I do wonder why my wife's ferritin is also high.....hmmm

I have already made changes to eliminate manganese exposure and possible undetected iron in the water, so will know in a few months if this is a problem or not.

thanks again and Happy Holidays!!!

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

Post by jimmylegs » Sun Dec 23, 2018 8:47 am

no probs, same to you and yours :)
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 » Sun Dec 23, 2018 12:09 pm

Excess Manganese Increases Inflammation

Mn in excess increases the release of several inflammatory molecules, including TNF-α, IL-6, IL-1β, prostaglandins, and nitric oxide.

These can cause brain inflammation and neuron loss [R, R].

In addition, Mn can activate the nuclear factor NF-κB, a master controller of inflammation [R].

This can't be a good for MS.


Serum ferritin is also a well known inflammatory marker
Fe is an important inflammatory disease marker, as it is mainly a leakage product from damaged cells. ...
Serum ferritin is also a well known inflammatory marker, but it is unclear whether serum ferritin reflects or causes inflammation, or whether it is involved in an inflammatory cycle.

So, could manganese be causing the inflammation and ferritin is reporting it with the higher numbers...and then how does it affect Zinc absorption.

Just thinking....will wait for manganese levels to come back to see if it supports the increased inflammation....
It just seems too much of a coincidence that both our ferritin levels are high.

So, this is something others on wells should take note of....How much manganese is in the water and is it causing inflammation?
Canada doesn't acknowledge high manganese levels as a problem and people that test water and install filtration equipment don't factor in higher values of manganese as a problem because Canada has not decided on a MAC level.
The USA levels are 300 ug/L and there are studies that suggest it should be lower.

Just wanted to throw this out there while working on it....

We can wait for manganese levels to come in before further discussion.....
Last edited by dano on Sun Dec 23, 2018 12:52 pm, edited 2 times in total.

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