Looking for advice

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sablesable
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Looking for advice

Post by sablesable »

Hi there!

I'm new to the forum and just wanted to generally introduce myself as well as give me history and ask for some opinions.

Im 30f now but I had my first flare at age 19. Presented with left sided numbness from chest down to toes. It lasted for about 2 months, 3 months until full recovery. About 1.5 years later I had optic neuritis in left eye which lasted for about 1.5 months. At this point I was diagnosed w rrms. I had 3 lesions showing on mri. Between then and until I was 28 I had no relapses. I also have never been on any DMDs. I take vitamin D daily but that is all.

At 28 I had optic neuritis which cleared up after about 1 week (perhaps pseudo exacerbation). No new lesions appeared on my MRI.

I'm now 30 and am currently in my worst relapse. Left sided numbness from my chest down (although this time not effecting my left arm/hand). This started about 2 weeks ago. 1 week ago I began noticing my right hand was feeling weak and now I have very little movement in my hand and right leg also feels weak. No changes in the left numbness.

My question is - based on what I've said here, would you consider my experiences to be relatively mild? I have felt very fortunate over the years not to have had many relapses but I realize this is not necessarily an indication of my future prognosis. Does only 3 lesions seem to indicate a good prognosis for my future? I have always been told that the sensory issues I've experienced up until now were a good indicator that my disease course looked favourable. But now with having some motor function issues, I have some new concerns.

Given that I'm already over 2 weeks into this relapse, would a steroid treatment still benefit me?

I'm also wondering if anyone can give me any clarity on how many people/percentage of people generally move from RRMS into SPMS? I have read 35% of people do and I've also read 90%... I know it will vary but I just can't find any straight answers on this.

I'm meeting with my neurologist on Tuesday but I thought I would post here hoping to talk to some people who would understand until then.

Thanks so much
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jimmylegs
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Re: Looking for advice

Post by jimmylegs »

hi ss :) welcome to TiMS

i'm 12 yrs post dx, no DMDs, and have generally been well except when nutrients are out of whack. when i was diagnosed, the rule of thumb was at least 10 lesions visible on MRI, so i am a bit surprised you were dxd with only 3!

i had the first of what i'm sure my docs will term a relapse earlier this year. they never gave steroids or had much input at all actually, except choose a drug. i did all the recovery work alone - so glad i have full text access to lots of research papers!!

i got some levels tested, and of those my d3 and zinc were garbage. i topped those two up and have been more diligent with all of the nutrients of concern for ms patients since. i'm supposed to be retested in the fall at which point i expect the neuro and GP to apply more pressure re choosing a DMD. yay! :?

i'm curious how much d3 you take daily and whether you are interested in pursuing inquiry and possible action related to other nutrients? i wonder if a broader spectrum nutritional approach might potentially help with any of your day to day symptoms.

i don't know much about stats re progression from rrms to spms, i'm afraid. clarity is thin on the ground with ms, but i'm pretty sure others will chime in to try to help fill that info gap to whatever extent they can :)
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sablesable
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Re: Looking for advice

Post by sablesable »

jimmylegs wrote:hi ss :) welcome to TiMS

i'm 12 yrs post dx, no DMDs, and have generally been well except when nutrients are out of whack. when i was diagnosed, the rule of thumb was at least 10 lesions visible on MRI, so i am a bit surprised you were dxd with only 3!

i had the first of what i'm sure my docs will term a relapse earlier this year. they never gave steroids or had much input at all actually, except choose a drug. i did all the recovery work alone - so glad i have full text access to lots of research papers!!

i got some levels tested, and of those my d3 and zinc were garbage. i topped those two up and have been more diligent with all of the nutrients of concern for ms patients since. i'm supposed to be retested in the fall at which point i expect the neuro and GP to apply more pressure re choosing a DMD. yay! :?

i'm curious how much d3 you take daily and whether you are interested in pursuing inquiry and possible action related to other nutrients? i wonder if a broader spectrum nutritional approach might potentially help with any of your day to day symptoms.

i don't know much about stats re progression from rrms to spms, i'm afraid. clarity is thin on the ground with ms, but i'm pretty sure others will chime in to try to help fill that info gap to whatever extent they can :)

Hi Jimmylegs,

thank you for your response! I have been lurking here for a while and your posts have been really helpful :)

This may be a bit ignorant but are Vitamin D & D3 the same (much to learn!)? I was previously taking 2000 IUs of Vitamin D but upped it to 4000 IUs since the beginning of this relapse (however to do honest I have no idea what is recommended for people with MS and was going to ask my neurologist about this next week).

I'm definitely interested in getting my nutritional levels tested. I'm unsure if I will have to do this privately or ask my neurologist/family doctor to refer me (I'm in Canada) - but I'm going to look into this and will for sure get back to you. I am very interested in exploring a nutritional approach. Since this relapse began, I've also added B12 (1000 IU) and Omega 3 (2000 mg EPA/100 mg DHA), but those are all new additions!

Thanks again
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Re: Looking for advice

Post by ElliotB »

Welcome to TIMS, hope you recover from your relapse quickly.

"have no idea what is recommended for people with MS and was going to ask my neurologist about this next week)"

Ultimately it is not the amount that you take that is important but rather the level of D within your body. Blood work will show give you that. It is important to know what number you are at. Everyone seems to react differently. You should do some research and decide where you want you D level to be. The 'normal' range for D is a large one. There are many opinions as to what range is best, but ultimately there is no consensus. Some people do well with low doses, Some take mega doses. It is difficult to overdose on vitamin D, but you should probably limit calcium intake if taking higher dosages.

There is a lot of info on vitamin D on this site, search for "Coimbra".
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jimmylegs
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Re: Looking for advice

Post by jimmylegs »

hi ss no probs, and happy to help!

yes vit D and D3 are the same thing - the latter is just a more specific term than the former. there are previtamin D, vit D2, vit D3, various circulating D2 and D3 metabolites, and even vit D4 that are either part of natural cutaneous biosynthesis or from various dietary and/or supplemental sources.

as a supplement i expect your 4000 IU of vit D is vit D3 aka cholecalciferol - an animal source form and therefore more bioavailable to you. if it's D2, that's a plant form called ergocalciferol, and it's less efficient as your body must convert it to D3 before it's properly bioavailable to you.

2000 IU of D3 daily is normally good for average joe, provided essential cofactors are present in sufficient levels to maximize absorption and utilization. my recent crap level (50 nmol/l) and a friend who's dealing with cancer (her level was a bit worse) prompted both our docs to advise 4000IU per day which is the daily upper limit (for average joe healthy person mind you) per health canada for no adverse effects long term. (edit: in neither case were appropriate cofactors suggested. in her case their use was at least approved upon review by pharmacist)

because i know what i'm doing, i had both my friend and myself complete a 10 day megadose regimen, 50,000K IU per day for 10 days complete with lots of supporting essential nutrient cofactors.

from personal xp i know that the 50K IU D3 x 10 days, which is supposed to achieve a +50 nmol/l boost in serum, can result in more like +70 nmol/l boost for me, even when cofactor status is crap.
when my cofactor status is good, 50K IU/d for only 8 days can boost serum D3 levels by +170 nmol/l.

now i'm back to a normal 4K IU / d regimen (and cofactors!) for a while until i can get retested. i'm waiting for a bit beforehand, to let that most recent megadose settle in.
i won't do any more high dosing until i have a clear sense of my dose response via that test result.

coimbra's stuff is premised on some people needing high D3 intakes. from what i've seen the idea is based on legit studies demonstrating high variability in serum response to a given intake from sun or oral sources. as with much research, c's approach also fails to properly assess cofactor interactions. his work has not been properly submitted to an academic journal for peer review. if you go looking for published coimbra studies you'll likely find at least one scenario in which other scientists question his research methods. re high dose d3 research specifically, you will find at best a handful of case studies (by others) suggesting safety of long term high dose D3 intakes. many studies with more participants consider 3 to 6 months 'long term' - i don't. particularly when these studies don't have a clear sense of what to look for in terms of consequences of long term impacts, their conclusions should perhaps be taken with a large grain of salt. this situation is a source of ongoing debate here at TiMS.

as elliot suggests, it is indeed the serum 25(OH)vitamin D3 level that matters more than the daily dose. if your serum d3 levels don't hit a satisfactory target via 2000IU/d, or 4000IU/d, or a short term high dose boost, it's time to look carefully at cofactor status. (this is something that is not done well in general, to date). piling higher and higher d3 intakes into a system with obviously poor absorption is just short sighted, both economically and environmentally.

in canada, the private testing options can be a bit of a headache. as i'm sure you know, the public avenue varies province to province. i have most xp with ontario's system. some tests are covered and others aren't. you can jump through some hoops to get serum d3 covered, but if that's not an option, for the most part the fees don't break the bank. if the family doc won't order the test then you go to a naturopath and tell them what you want. that adds another chunk to the bill since you're paying for the ND's time. there's also the chore of resisting sales pitches for expensive and unnecessary extras.

i wonder if you have access to existing bloodwork results, and if so it would be good to have the last results for serum ferritin, serum vit b12, and serum vit d3 if available. serum ferritin is the most likely, since it's built in to standard bloodwork for any average joe, never mind an ms patient.

the 'short' list of less standard nutritional tests that would be of interest for you as an ms patient include:

serum b12
serum d3
serum magnesium (NOT rbc magnesium - it costs more and is unnecessary)
serum zinc
serum copper

there are more, but if each test ended up running you about $30 (*some* should be covered mind you), 5 tests is already getting up there. good to hear you've added b12 and omega 3 in the meantime!

the other way to conduct investigations is via my old fave the three day diet diary (including all foods fluids meds and supplements). that can help point up any nutritional gaps and/or problematic combinations. that's that for now!
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sablesable
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Re: Looking for advice

Post by sablesable »

Thank you jimmylegs! You've given me a lot to think about. I am anxiously awaiting my appointment tomorrow with my neurologist and am definitely going to discuss this with her and see if I can get my hands on previous bloodwork/get some updated. I am in ontario too, by the way! Toronto.

I actually ended up going to emerge on Saturday evening because I was just at my wit's end and feeling a bit panicked. The weakness I have in my right hand is now very apparent on my entire right side of my body. When it spread to the right side of my face, I became a bit overwhelmed. In my leg, I would describe it as feeling like walking through water. There was no neurologist on call that evening but they gave me a prescription for 1250g of prednisone. I've never taken steroids before and I always thought it would be delivered by IV. I decided to not fill the prescription and just wait to see my neurologist.

Is weakness a typical symptom in RRMS? I am trying not to worry myself into a panic but I thought this was more indicative of SPMS/PPMS... Maybe I would be a bit calmed if anyone out there has experienced this and then had a remission/near full recovery.

Last night I woke up feeling like I couldn't breathe. I would try to take a deep breath and just couldn't fill my lungs. It's almost like my chest felt weak. I've never experienced MS hug before but I wonder if that's what it was or if it was just a run of the mill panic attack.

Anyway, thanks for listening :)
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jimmylegs
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Re: Looking for advice

Post by jimmylegs »

hi ss (neighbour! ;) ) sorry to hear you had a rough weekend. i've never taken oral prednisone or steroids of any kind (well except vit D3), so no helpful input there i'm afraid.

it should be easy to obtain a copy of your most recent bloodwork and see what might be relevant and useful. if not, there's a process in place in ontario for making the request and soon individual bloodwork will be readily available online. i recently paid the $20 to access my dynacare results for a year but i expect that the provincial system will be covered.

if you don't get buy in from the neuro re checking any other levels mentioned above, please do not give up. if not the neuro, try your GP. if you don't get support from the GP, see if you have any coverage for a naturopath's time (i happened to have x amount per year under a student plan). if you don't have that coverage, you could inquire re the cost of a naturopath visit to write a requisition for any or all of the 5 tests listed above. and finally, if *none* of that pans out, and even if it does, i strongly recommend starting a journal of all intakes through the day for at least three days (two at work one at home). that helps give a sense of a person's average week.

i am no diagnostician, and there are so many factors that could be influencing your current xp that i'd feel out of my depth commenting on some of what you report. i can say that i have experienced and recovered from both weakness and from shortness of breath and i have a solid idea of the origins of both problems *in my case*.

here are the things i can speak to from experience. when i was b12 deficient, i was so weak i couldn't squeeze shampoo out of the bottle without using both hands. you can envision how much fun that was lol.

when my magnesium was depleted (in hindsight it had been low for years and i made it worse taking 4000IU of d3 long term without appropriate cofactors) i definitely had shortness of breath. that *exact* feeling of not being able to fill the lungs. it was a long and nasty learning curve finding the right magnesium product for me, and the appropriate daily intake. but once you have it right, if your shortness of breath is indeed muscle (esp diaphragm) spasticity from mag depletion secondary to supplemental d3, then once you start on repletion things should clear right up for you in a matter of hours - maybe a couple of days.

i'll save you the learning curve headache and recommend 7-10 mg/kg body weight of magnesium daily (that's based on published research and may go above and beyond health canada recommendations on a case by case basis). get as much as poss from diet and if needed, top up with a quality soluble absorbable supplemental form like magnesium glycinate. in contrast, high dose magnesium oxide goes right through you - even though it did help me in early days, the strongly laxative side effect was an unwelcome hurdle.

re panic, i think it's all part of the same package. i had always been a high anxiety person right up until i started really working on magnesium status. no longer :)

oh i just remembered, you lucky canadian you, that you can get free magnesium samples delivered to you (i don't like mag pop myself, but if you would, why not try it out) http://www.trymagpop.ca/#free-sample
this product is not quite as good quality in terms of absorption, but hey another free sample what the heck http://naturalvitality.com/free-calm-samples/

good luck with tomorrow's appointment! and maybe consider taking a little break from the d3, to see if that helps clear up your breathing issues :)
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sablesable
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Re: Looking for advice

Post by sablesable »

After I read your message jimmylegs I immediately went and got some magnesium glycinate (from orange naturals). I took it that night at the dosage you recommended and by the next night my strength was back to about 80% and I was feeling much, much better. Funny, you mentioned not being able to squeeze a shampoo bottle, that was my biggest gripe as well. Also have had no breathing issues since taking the magnesium :)

In the meantime, that very same day was my neurologist appt. Neurologist was in an awful, awful mood... didn't look at my face once. She was not forthcoming with giving me my previous bloodwork and said I would have to ask her receptionist but not until next week because they were so busy. Anyway, all of that is to say that I don't have any previous results yet. She gave me a prescription for oral steroids (prednisone) which I have been taking now for two days (despite my better judgement since I felt like I was already on the upswing). I knew it would relieve my family if I took it, and so i am.

I'm in the process of looking for a naturopath in Toronto now and was wondering if anyone has any recommendations (maybe I should post in a separate thread?). I feel like I just want someone who will take an interest in my health and not just look at my chart and make assumptions about me. It can be very frustrating, as I'm sure we've all experienced at some point or another.

I am *probably* (still some hesitation) going to start Tecfidera in the next 1-2 months, but I really want to get on top of exercise, diet and supplements. Diet and exercise I have been great with, but supplementing... not so much! I'm looking forward to getting into a naturopath asap to get my bloodwork done.

This forum has been really helpful. thank you all
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jimmylegs
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Re: Looking for advice

Post by jimmylegs »

hi again!

so glad to hear you are feeling better. interesting that your weakness has improved with the addition of magnesium. in my case, weakness was absolutely linked to b12 deficit (it's true i had the most diverse array of nutrient deficits back then mind you - but working on b12 in isolation would definitely help with weakness at the time).

sorry to hear your neuro was having a bad day. i guess we're all entitled :S don't take the pressure off re access to your file info though.

i don't personally recommend any naturopath for his or her profession's sake. i have always been extremely skeptical of my own naturopath's input, which made no sense in my case. in other cases she was just incorrect and i had to explain how things work to her, and have her change the info she had provided to my doctor. she was a means to an end when i wanted one blood test done. other than that, a waste of time. she also has ms herself, which i originally thought was encouraging, but she has done markedly worse over the last decade than i have. to me, having someone who will write the bloodwork requisition you need is the start and end of it!

three day diet diary is sounding like the quickest and most easily controlled route to assessment in your case. a diary of this sort should be detailed for each meal, snack, etc and shold read like recipe ingredients, not like menu items.

for example today for breakfast i had:
1/2 c steel cut oats
1/2 c 5-berry mix
2 oz 2% milk
2 tbsp flax seeds
1/2 tbsp maple syrup

morning snack:
1/4 c trail mix (total recipe is equal parts pumpkin seeds, sunflower seeds, cashews and walnuts, plus a scattering of dark chocolate covered cacao nibs, dried cranberries & honey-flax peanuts)

if you are comfortable sharing info, please do :)
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sablesable
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Re: Looking for advice

Post by sablesable »

Hi Jimmy! Well, since you mention it I did actually start taking B12 at the start of the relapse, after seeing somebody (i think you!) suggest it somewhere on the forum. So perhaps that was at play as well. I'm really interested in learning about how all of these work together, but my knowledge at this point is pretty limited :) I see what you're saying about a naturopath - maybe I will start with just getting the bloodwork and see how much I can figure out from there.

I can definitely provide a diary of my meals. I would say my biggest problem might be that I eat pretty much the same things every day with not a ton of variety (hence how I can do this easily by memory). I do appreciate you taking a look! I'll mention also that I don't drink pop - I didn't add below but I drink about 1.5-2 litres of water day.

___

Tuesday Breakfast:
Coffee
1 cup greens+ superfood drink (genuine health brand)
2 whole eggs
1/4 cup of kimchi
1/4 cup black beans
handful of sprouts

Tuesday Lunch:
1/2 Chicken breast
1 cup(ish) Mixed greens
1/2 an avocado
2 tablespoons balsamic/olive oil

Afternoon coffee

Afternoon drink with tumeric/water/lime 1 cup

Tuesday Dinner:
Chicken breast, barbecued (marinated in rosemary, garlic and oil)
Salad with mixed greens, beets, haloumi cheese, red onion, about 2 tbsp balsamic/olive oil

_

Wednesday Breakfast:
1/2 cup steel cut oats
1 cup smoothie made with about equal portions of pineapple, avocado, blueberries, greens+ (genuine health brand)
20 blueberries (yes i counted)
20 prednisone steroid tablets, hahah

Wednesday Lunch:
1/2 Chicken breast
1 cup Mixed greens
1/2 an avocado
2 tablespoons balsamic/olive oil

Afternoon coffee

Wednesday Dinner:
I ate out at a burrito place and had a steak/rice/bean bowl. Will estimate below:
1/2 cup of unmarinated shredded steak
1/4 cup of rice
1/4 cup black beans
guacamole
handful of shredded chedder cheese
cilantro
1/3 cup salsa (tomato, red onion, lime?)
no sauces

3 squares of dark chocolate before bed
__

Thursday Breakfast:
1/2 cup steel cut oats
1 cup greens+ superfood drink (genuine health brand)
20 blueberries
20 prednisone steroid tablets

Thursday Lunch:
2 whole eggs
1/4 cup of kimchi
1 avocado

Lemon square from coffee shop (very sugary and very delicious)
Cold iced coffee

Afternoon drink with tumeric/water/lime 1 cup

Thursday Dinner (currently cooking...)
2 cups zucchini "pasta", with tomato meat (beef) sauce
Sprouts

Will likely have a couple of dark chocolate squares to top off this night!

__

Thanks Jimmy, can't wait to hear what you make of this!
I also eat quite a bit of fish usually - salmon or tuna usually. I think I probably eat quite a bit of meat/fish compared to the average...
sablesable
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Re: Looking for advice

Post by sablesable »

Also, if it's relevant i'm a 30 year old female, 5'11" and i weigh 180lbs :)
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jimmylegs
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Re: Looking for advice

Post by jimmylegs »

oh man you are my kinda forum ppl LOL :D great info!

all right i'm not going to start with magnesium or b12 because you have added those via supplements and causal or not, you are feeling better.
i'm also not starting with iron because it's very very very likely that a serum ferritin assessment is in existing bloodwork once you get that paperwork in hand.

zinc is another key essential to watch for with ms, so let's start there

let's split up some of this next effort. can you pls go through day 1 and work out your total estimated intake of zinc, using this resource:
http://www.whfoods.com/genpage.php?tnam ... #foodchart
(if something you ate is not listed, just put n/a for that line)

i'll get started on day 2 also for zinc and then we can reconvene.

high five to you for avoiding pop!

at some point if you can add a day that includes a typical fish component to a meal, that would be good too.

i will likely revisit your diversity comment later - but for now, to the zinc review :)

oh and ps with those final dtls you've reminded me - i was wondering where you ended up for a total daily mag intake target, considering that for you 7-10mg/kg body weight means 560 - 800 mgs per day?
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Re: Looking for advice

Post by jimmylegs »

Wednesday Breakfast:
1/2 cup steel cut oats - 3.1 mg converts to 2 mg due to lower bioavailability from veg sources (see health canada tables, note 23 at https://bit.ly/2ha1MjW
1 cup smoothie made with about equal portions of pineapple, avocado, blueberries, greens+ (genuine health brand) - n/a
20 blueberries (yes i counted) - n/a
20 prednisone steroid tablets, hahah - ;)

Wednesday Lunch:
1/2 Chicken breast - n/a
1 cup Mixed greens - n/a (zinc in a cup of spinach applies to spinach boiled 1min and drained. far more dense than one cup raw, obvi)
1/2 an avocado - n/a
2 tablespoons balsamic/olive oil - n/a

Afternoon coffee - n/a

Wednesday Dinner:
I ate out at a burrito place and had a steak/rice/bean bowl. Will estimate below:
1/2 cup of unmarinated shredded steak - 4mg
1/4 cup of rice - n/a (interestingly though, zinc is one thing not lost when brown rice is processed to white. whatever small amount of zinc there is in rice, is distributed throughout the grain, not concentrated in the hull)
1/4 cup black beans - n/a
guacamole - n/a
handful of shredded chedder cheese - n/a (cheese never shows up as a good option for nutrients of concern for ms patients. interesting info on this site however: http://www.whfoods.com/genpage.php?tnam ... e&dbid=121 )
cilantro - n/a
1/3 cup salsa (tomato, red onion, lime?) - est 0.075 mg (1/3c of tomatoes, adjusted down d.t. veg source)
no sauces

3 squares of dark chocolate before bed - n/a

grand total for day 2 est 6mg
so you're a touch low for day 2 according to health canada's (*cough*flawed*cough*) RDAs, ie 8mg per day for your age/gender to stay 'normal'.

BUT zinc normal reference ranges include a bunch of sick ppl in the lower half of the range, including ms patients.

in fact, healthy controls (especially where subjects have been singled out as representing health, not just absence of some specific illness under study) have much higher serum zinc levels than many patients whose levels are comfortingly (although mid to low) 'normal' :-x
related reading http://www.thisisms.com/forum/natural-a ... 29847.html

the daily UL (upper limit), again per https://bit.ly/2ha1MjW , is 40 mg - and that limit applies only to supplemental sources. you can safely go higher via zinc dense foods.

i'm curious if you ever eat oysters, and if so how often? i struggle with oysters :S but while they do not appear in the main list at whfoods, they are super zinc dense and are specifically mentioned elsewhere on the site: http://www.whfoods.com/genpage.php?tname=recipe&dbid=32

i just can't (so far anyway). i wish scallops were on the list of healthy zinc sources!!
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Re: Looking for advice

Post by NHE »

jimmylegs wrote:i'm curious if you ever eat oysters, and if so how often? i struggle with oysters :S but while they do not appear in the main list at whfoods, they are super zinc dense and are specifically mentioned elsewhere on the site: http://www.whfoods.com/genpage.php?tname=recipe&dbid=32

i just can't (so far anyway). i wish scallops were on the list of healthy zinc sources!!
Many shellfish are contaminated with microplastics.

Guess What's Showing Up In Our Shellfish? One Word: Plastics
https://www.npr.org/sections/thesalt/20 ... d-plastics

Microplastics in bivalves cultured for human consumption
https://www.sciencedirect.com/science/a ... 9114002425

Microplastics found in supermarket fish, shellfish
https://www.cbc.ca/news/technology/micr ... -1.3954947
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jimmylegs
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Re: Looking for advice

Post by jimmylegs »

yes and even in tap water. and roundup in the oatmeal etc etc etc.

re shellfish and microplastics - while i had never considered myself a contributor to the problem, at least not via the various personal care products in which microplastics have been used, it was interesting to read recently that the worst contributor to ocean floor microplastic is tire rubber. having embraced the use of the wheel in its modern form, mea culpa :S

one of the messages i did find valuable from my naturopath, where seafood in particular is concerned, is not to forgo the good for fear of the bad.

related recent post http://www.thisisms.com/forum/diet-f9/t ... ml#p254198

it was definitely me trying to do food 'right' from an environmental perspective (including fear of contaminants) while having only grade school education on nutrition and an uninformed skepticism about public health resources like the food guide, that ended me up with an msdx in the first place.
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