Disappearing Lesions

This is the place to ask questions if you have symptoms that suggest MS, but aren't yet diagnosed.

Re: Disappearing Lesions

Postby MnRdunck » Fri Dec 15, 2017 2:20 pm

Hmm you are right. My doctor was actually upset with himself that he had not checked my D yet. I have only had him 2 months. So I know that is being checked and the zinc required a special vile for my blood that the woman had to look for first. I saw the vile so I know it is coming too. They probably just have not released the results to me yet my doctor I bet has them. I am waiting on an X-Ray report that my doctor already has that has a slight problem. Anyway could be the weekend although they are pretty good and that might not matter.

So any possibilities on the nerve pain? I think during these "Attacks" that go for 4-5 days this is what I think the forehead region pain might be Trigeminal neuralgia. I know it is odd to hit the forehead but that nerve most certainly has a branch to that region of the head.
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Re: Disappearing Lesions

Postby jimmylegs » Fri Dec 15, 2017 5:03 pm

ok good to know those numbers for d3 and zinc are coming.

this piece on the neuro pain/thiamine connection might be something to consider:

Pain Medicine: An Essential Review (2017)
http://bit.ly/2zgr3jz

vit b1 also looms large in at least one older nutritional protocol for ms, eg:

"Thiamin hydrochloride: 300mg to 500mg, 30 minutes before meals and bed hour, and during the night if awake. The higher amounts in long-standing cases. This requirement is high, since much is lost through action of gastric juices and loss due to perspiration"

and if it happens to work, at least it's a pretty affordable solution! mind you, while this particular protocol involves loads of injections and i have never personally bothered with any of those. food and supplements (occasionally sublingual, which is equivalent to injection in terms of bypassing GI tract).

there are a few more studies kicking around, but i really should be getting a couple other things done atm! ttfn :)

ps possibly of interest: http://neuromuscular.wustl.edu/nother/vitamin.htm#b1
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Re: Disappearing Lesions

Postby MnRdunck » Mon Dec 18, 2017 2:18 pm

Okay got the last two.
Analyte Value Flag Reference Units Status Site
Zinc 91 60-130 ug/dL Final WARDE

Analyte Value Flag Reference Units Status Site
Vitamin D 25 Hydroxy 20.4 L 30.0-100.0 ng/mL Final CO
Comments:
Expected Values:

Deficiency......<10 ng/mL
Insufficiency....10-30 ng/mL
Sufficiency......30-100 ng/mL
Toxicity........>100 ng/mL

So I get not to bad on the zinc, D3 Hydroxy (whatever that is) shows insufficiencey but not low enough to be considered deficient. D has been low for years for me maybe since the mid 2000's? I don't know, what do you get from all the blood work?
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Re: Disappearing Lesions

Postby jimmylegs » Mon Dec 18, 2017 2:55 pm

ugh reference range bs strikes again :S reminds me of my first uric acid test. so frustrating.

anyone with zinc between 60-75 ug/dl would be red flagged as deficient in my local hospital's lab. but at your local lab, that whole block sits there making it look like your level is comfortably middle of the road, which it is not!

your low 'normal' serum zinc level (90 ug/dl) is a match for a typical MS patient profile

30 ug/dl still to go, to hit 120 ie match average serum zinc levels seen repeatedly in healthy controls.

re vitamin D: aim for 40 ng/ml for serum 25(OH)vit d3 and you'll be on the right track :) needs all co-factors in the treatment regimen!

https://www.vitamindcouncil.org/about-v ... -minerals/
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Re: Disappearing Lesions

Postby MnRdunck » Mon Dec 18, 2017 3:55 pm

Thanks I did not really get the link other than those vitamin and minerals should be there too. I did not see the recommended D3. If I understand what you are saying I only need to raise my D3 15 points? That's not too bad then right?
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Re: Disappearing Lesions

Postby NHE » Mon Dec 18, 2017 4:25 pm

MnRdunck wrote:Thanks I did not really get the link other than those vitamin and minerals should be there too. I did not see the recommended D3. If I understand what you are saying I only need to raise my D3 15 points? That's not too bad then right?


45 ng/mL is a good number to work towards.

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.
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Re: Disappearing Lesions

Postby jimmylegs » Mon Dec 18, 2017 4:40 pm

yes about the link, just make sure the cofactors are available. optimize magnesium and zinc etc to ensure best utilization of d3.

if i'm reading your 25(OH)vit d3 result properly, ie 20 ng/ml, then to reach min 40 to my eye you need to double your current level ie not 15 but 20 ng/ml higher. when the blood test itself is called 25 something something, an easy thing to misread!!

either way, don't try for 40 ng/ml or any higher without optimizing d3 cofactors in serum, including mag, zinc, etc. recall that boosting serum mag up into the middle of that 2.3-2.7 range will help push your d3 levels up all by itself, without increasing dietary or supplemental d3 intake.

40 is a *minimum* to match a d3 range associated in research with lowest risk of ms. but if you just throw d3 at it indiscrimately when there's a magnesium issue in the mix (which we know is the case for you) you risk driving already lower normal mag levels down further. i've done it, and it is not. fun.

in addition to nutrient dense whole food sources of things like mag and zinc (which are basically great multis in and of themselves) consider:

-a high quality zinc supplement (properly balanced w copper), start with 50 mg per day for one month, balanced w 2 mg copper to guard against depletion
-a high quality magnesium supplement (such as mag glycinate or similar, look for 100-200 mg per powder capsule, take one or two per day before food)
-a high qualty multivit/min
-a vit d3 supplement (assuming you're somewhere it's winter atm, could test out what a month using an extra 2000 IU per day might do for you - make sure you take some magnesium *with* daily d3, and some more magnesium separately, well away from d3 intake - this timing recommendation came to me via the pharmacist who got me out of my past high d3 low mag fiasco some yrs back)
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Re: Disappearing Lesions

Postby MnRdunck » Tue Dec 19, 2017 9:16 am

Okay here is where I am at (probably my last post for this thread). On the subject of remyelination this is from a US government website that states it is not only possible but it can and does happen.

https://www.ncbi.nlm.nih.gov/pubmed/17531860

Now my new problem, my doctors office just called me to let me know about my labs and that they were calling in some D. But not D3 it will be D2 2,000 units weekly. I have not found anything good about D2. Is there a reason that he would do this? Should I just go and get my own D3 and how many units?
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Re: Disappearing Lesions

Postby jimmylegs » Tue Dec 19, 2017 9:29 am

to your question, please refer to the itemized suggestions above, including amounts.

d2 aka ergocalciferol is a plant form with a much poorer increased serum d3 level per unit taken (ie worse dose response than oral d3).

dose sounds low too. are you sure it doesn't say 20K per week? that would be more the usual inappropriate way of going about it.
no cofactors mentioned, i suppose. typical :P

a sustained daily dose of d3 as itemized above would be the better method. if they're going to make you pay for this incoming d2 it won't kill you to take it but you'd be better off spending your money on a properly bioavailable, mammalian form.

my own doc's most recent input re vit d3 is to maintain a sustained lower dose intake in preference to high intermittent supplemental intakes. i had a note on my file re x thousand per week, she said no, x thousand per day. i said yeah and you times that by 7 and what do you get? and she said too bad, keep it evenly spaced throughout the week. i probably looked into it at the time but haven't got a specific study conclusion at my fingertips to back that up. i was just stunned that my doc had something to teach me about d3 instead of the other way around. what a refreshing change.
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: Disappearing Lesions

Postby jimmylegs » Tue Dec 19, 2017 2:20 pm

also if you choose to go large on thiamine as a potential contributor to pain management, pls consider doing so in context of a high quality b complex taken several times per day over the short term.

important: max 100mg per day B6 over any sustained period of time. any more can cause unwanted neuro side effects.

even though you'd be taking any such thing primarily for the B1, the complex is important. these things do not occur in isolation in nature.

as one example of a b complex option, this product maxes you out on supplemental b6 for the day in one *serving* which you'll note consists of 3 *capsules*. makes it flexible so you can combine with other products to boost b vits while making sure you don't exceed that 100 mg per day cutoff.
take control of your own health
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ask for referrals to preventive health care specialists eg dietitians
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