This Is MS Multiple Sclerosis Community: Knowledge & Support

and by the way, congrats on reading this monster start to finish. i should do that too, one of these days!

_________________
my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com

Hehe. It is a monster thread but that's good. It's very helpful to be able to see people's reaction to different "therapies" over time. More of us should document our experience like this.

I'm still processing your response to my questions...waiting for that epiphany that makes everything make sense cuz right now there are minor holes in my alignment of my Aldo/cortisol theory and your supplement regimen/experience.

Didja get that paper done?

nope, not done the paper... :S

re documentation - there's actually a 'journals' section of this site, but i don't know how well-used it is or even if it is working properly :S

good luck re the epiphany. what are the holes specifically?

anyway. back the the writing i go! sigh...

_________________
my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com

I never see the journals come up in active topics so I'm thinking no one uses them anymore. I should go look some up though.

Holes:

1. I think D only negatively regulates aldosterone through RAAS, not the stress response. I don't think our RAAS is very active...why would it be when we have so much circulating sodium? But...maybe RAAS is also involved in the stress response http://www.ncbi.nlm.nih.gov/pubmed/22290200 Need to research that more.

2. If you've squashed the cortisol with zinc for a significant amount of time and your hpa-axis is back on track, why does the need for supplement continue? If the hpa-axis dysreg is the cause of our greatest deficiencies, wouldn't we stop having such high needs for supplementation and feel like the rest of the malnourished people in the world...like normal? Why do you still sometimes feel Ms'y? Is there something else we are deficient in that we need to address to completely close the door on MS?

Okay...those holes are kind of big and kind of abundant. lol Got the answers?

(I'm not assuming you buy into the hpa-axis theory...just putting my questions out there)

i'll start with the second one first.

2a) why the continued need for supplement.

* dietary intakes of zinc are generally low, at least in part due to societal declines in red meat consumption over the last few decades (this is documented in published peer reviewed research). consumption of foods that impair zinc absorption are high. awareness about the issue is low.

* based on one dutch study i put out there earlier today, daily intakes tend to be only about half the RDA which is only 15mg - and that is more than likely an underestimate of what is actually required on a daily basis for health... RDAs are about preventing outright deficiency only.

2b) If the hpa-axis dysreg is the cause of our greatest deficiencies, wouldn't we stop having such high needs for supplementation and feel like the rest of the malnourished people in the world...like normal?

* that is a rather big if, isnt it. if however the opposite is true and imbalanced nutrient inputs drive HPA dysregulation and its associated effects, then as soon as you go back to 'normal' behaviour, the wheels come off once more. and as for losing such high needs for supplementation, recall- i used to notice within days if i went off supplements. please note that i am not talking only about zinc here. anyway as i was saying. these days, it takes much longer and the symptoms i do notice are far far more subtle. i would even argue that the symptoms i do notice are in fact considered 'normal'. such as menstrual cramping (not a zinc depletion symptom).

* other zinc malnourished people may have protection via having fortunately high liver stores, or high dietary intakes of vitamin E which apparently protects against zinc deficiency (i will have to dig up that study again and find out in exactly what way it is protective b/c it can't be watching the wheels on *all* zinc's many activities...)

2c) Why do you still sometimes feel Ms'y

compared to 2006-2008, i feel in no way ms'y.. as above, these days the symptoms i notice are far far more subtle. but,

*i do have some minor permanent damage

*i still do things that deplete nutrients on an ongoing basis.

2d) Is there something else we are deficient in that we need to address to completely close the door on MS?

yes. all the suspect nutrients i have identified to date are listed in the first post of this thread.

this goes back to your first question. strong links between stress and magnesium, another biggie for ms patients. (and the source of the noticeable depletion symptom i mentioned above).

_________________
my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com

The journals section of the site ceased function after the Sept 2011 software upgrade. It was readable for a short time aftwards, but then was removed as the old software was a security liability.

Jimmy,
Do you have MRIs to show what's happening in your brain/spine as a result of your regimen?

yes. but they are old and only reflect the first year or so. i just spent some time searching for an old post where i put up before and after cervical scans for comparison. no luck. i remember you could argue that my lesions were improved (my assertion), at the same time you could argue that the resolution of the scans makes comparison useless (somebody else i can't recall who). at the time i was only looking at b12 so who knows what else may have happened since. i have to go in to scan my knee soon so perhaps i'll go for brain and spine as well. i did land on my head after all, after snapping my knee apart... :S i still have my original scan disks so maybe it would be interesting to post before/after again.

_________________
my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com

ps what did you think about the answer to your holes item 2 above?

_________________
my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com

Weeelllll....lol...seems like the answer to those questions is just plain ol' "we still have MS, dummy" (<-that would be me). It might start with a vitamin deficiency or hormone dysregulation but it causes progressive damage that can't be fixed just by undoing the original cause??

You are doing so much more than messing with hpa-axis dysregulation with your vit d, zinc, and mag (haven't touched upon the selenium yet). It turns out that zinc AND mag block NMDA channels (neuroprotection). Mag blocks sodium channels which are getting a lot of attention in regards to MS.

How's this for confusing?? I thought we were low on zinc?
http://onlinelibrary.wiley.com/doi/10.1 ... 9/abstract

And then there is this...
http://onlinelibrary.wiley.com/doi/10.1 ... 0/abstract

and this...
http://www.ncbi.nlm.nih.gov/pubmed/1296766

And somewhere out there are a bunch of studies implicating zinc as a cause of MS.

How are we supposed to make sense of that?! I still think you are on it with the zinc and mag especially. So curious to see if your MRI shows slowing/reversal of progression. I want a sodium MRI to find out where I am in progression. Tick tick tick.

zinc has a role in so many many different processes in the body, i think it would take me forever to investigate them all. that's why i like just focusing on zinc as the simple lowest common denominator.

as for the studies you mention, it's the kind of situation where you need to evaluate how the normal controls were selected, you need to see raw data, and you need to figure out what the implications are for zinc to be higher in plasma or erythrocyte bound zinc as opposed to serum.

refreshing my own memory on the nuances of plasma vs serum vs erythrocytes...
Blood plasma is the straw-colored/pale-yellow liquid component of blood that normally holds the blood cells in whole blood in suspension. It makes up about 55% of total blood volume. ... It is mostly water ... and contains ... clotting factors...
Red blood cells, or erythrocytes, are the most common type of blood cell and the vertebrate organism's principal means of delivering oxygen (O2) to the body tissues via the blood flow through the circulatory system.[1]
Blood serum is blood plasma without clotting factors (i.e.—whole blood minus both the cells and the clotting factors).

further, you can go looking for studies of serum zinc levels and find all kinds of info related to ms and all kinds of other diseases. when you search 'erythrocyte-bound zinc' every result points to that single study. doesn't bode well for replication of the research finding. and replication is critical to consensus. there's more info out there on the relationship between erythrocyte zinc and serum zinc and the factors that might be influential, but at the end of the day if you can't see the raw data in the study and how they set up the methodology, and they don't even give you values in the abstract, then from where i sit, it just isn't that useful. from what you can see in the abstract, i'm not sure i agree with everything there. i have seen other studies to suggest that erythrocyte zinc does fluctuate with daily zinc intakes. what is meant by 'relatively' independent? too many unanswered questions.

as for zinc causing ms, zinc toxicity and deficiency are completely different things, each valid. ms is a blanket dx and when you dig down you can find a range of things going on at a more subtle level in various patients. imho there will never be one causal factor that is identical for every person with an ms dx.

_________________
my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com

this is interesting

Erythrocyte zinc content in critically ill patients.
http://www.ncbi.nlm.nih.gov/pubmed/16176172
Abnormalities in thyroid hormone metabolism are common in critically ill patients. However, it is not known if these patients are truly hypothyroid at tissue level. Erythrocyte zinc has been shown to be a tissue marker of thyroid hormone status. In this study we have measured the erythrocyte zinc in critically ill patients. In this observational study we measured the zinc content of young erythrocytes in blood samples from 33 healthy subjects, 26 hypothyroid patients, four hyperthyroid patients, and 44 patients in the intensive care unit--22 of these were admitted after a major surgical procedure (surgical group) and the other 22 patients had a variety of conditions (non-surgical group). Erythrocytes were separated according to age by centrifugation. Plasma thyroid hormone concentrations were abnormal in 70% of the critically ill group. Erythrocyte zinc was significantly lower in hyperthyroid patients and higher in hypothyroid patients. In the non-surgical patients, erythrocyte zinc of young cells (median 256 micromol/L of cells) was significantly higher than (p<0.01) the corresponding cells in the healthy controls (202 micromol/L of cells), whereas in the surgical group it was not different (197 micromol/L of cells). We conclude that in non-surgical critically ill patients, erythrocyte zinc content is higher, suggesting that these patients may be hypothyroid at tissue level.

so i went looking for info on nutritional diffs btw hyper and hypothyroidism. i'm finding that copper zinc imbalance could play in here.

Study of Some Trace Elements in Hyperthyroidism Patients
http://www.iasj.net/iasj?func=fulltext&aId=31532
"The study showed that serum zinc and selenium level of hyperthyroidism patients were significantly lower (p<0.05) than the level in normal subjects. While a significant increase in serum copper level was demonstrated in patients as compared with that of the normal subjects."
if you check out the full text, table one, you can see that everyone's zinc is low but similar in patients and controls, while copper is much higher in patients vs controls.
hyperthyroid patients had average copper levels in the low 30s umol/L but zinc levels averaging about 8 umol/L.

so if hyperthyroid means low erythrocyte zinc, is copper balance playing into it? i don't know.

now for hypo...

Assessment of Selenium, Copper and Zinc in Hypothyroid cases
http://www.onlineijra.com/research%20pa ... _cases.pdf
"The range level of Copper and selenium was found to be similar and within normal limits among cases and controls of this region. The level of Zinc was lower in cases as compare to controls"

when you look at table 1, you can see that copper levels are way more consistent between patients and controls than in hyperthyroid cases. zinc is the only thing that is significantly different between cases and controls here.
hypothyroid patients had copper levels around 17 umol/L zinc levels around 15 umol/L after units conversion and, so copper is okay and zinc only needs to come up a little.

in any case, i would suggest that ms patients may be more typically hypothyroid, with the lower serum zinc levels associated with both conditions, and therefore show elevated erythrocyte zinc, possibly associated with copper zinc imbalance characteristic of hypo and not hyperthyroidism.

how's that, clear as mud???!!!

_________________
my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com

Interesting! I've been randomly reading as I could throughout the day. Didn't save any links about this (was on phone) but hpa-axis dysregulation causes hyper and then hypothyroidism. I think I had hyperthyroidism about 4-5 years before 1st MS attack...I lost a bunch of weight for no reason (it was lovely!). And then soon after MS hit, the weight returned with relatively little change in activity or diet (it wasn't lovely!). I read some stuff about zinc/copper too...some of it had to do with fatty liver I think...lost the links and thoughts though. I'll have to dig it up again tomorrow when ds isn't yapping at me about video games.

I've been thinking about this rrms/spms thing. This is the clearest explanation I could find about the progression of hpa-axis dysreg...
http://www.healthrevisited.com.au/Mental_Health.php

IF (big lol) rrms is hyperfunction, then maybe spms is a state of hypofunction. Wouldn't that mean that zinc shouldn't be a part of that plan as it negatively regulates cortisol? Maybe at that stage it should be about adrenal support which would focus on vit C, pantothenic acid, b6, manganese, magnesium (which will block NMDA just like zinc), and raw adrenal tissue (ew).

I think vesta is spms (?) and adrenal support seems to work for her. It seems like something flipped for PN last spring (?) with the zinc. It went from working to not working. Wouldn't that kind of fit with the transition from hyper to hypo active adrenals? And, when each of them took or drank something to suppress aldosterone, they both felt ill/sleepy. I dunno...just trying to tie things together.

(Vesta and PN, I hope you don't mind me "studying" you. )

sob. site lost my post AGAIN.

anyway. i have tended to focus strongly on target healthy values rather than characteristing nutritional or thyroid or adrenal profiles in different forms of ms. so, i don't have the data to have a discussion about that. i don't know if the research exists.

it would certainly be interesting to see more bloodwork from more ms patients, to try to match up patient experience with lab values.

_________________
my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com

It does make sense to focus on healthy levels. Just read spmsers are even lower in zinc than rrms and ppms. Maybe that's a result of depletion from the whole rrms phase and they recover levels quickly...not needing long term high supplementation??

It is all a guessing game without test results. I think since these vit/mins have such a great impact in both shortage and excess, we should all monitor our levels. I'll keep sharing my labs but that's gonna get pretty boring and useless. Need a broader field of info in a lab results thread!

(Took 120mg mag and 22mg zinc last night. Got a little leg hypersensitivity. Tonight I just did the mag and no hypersensitivity. I'm pretty sure my cort/Aldo is a bit low tho getting better (based on finger psi). I wonder if the zinc didn't exacerbate the issue).