Hello and wanting feedback

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Re: Hello and wanting feedback

Postby jimmylegs » Sat Jan 21, 2017 7:31 am

that is great news qg :) you likely know sublingual b12 supplements also go straight to the bloodstream. around the time i was diagnosed i used to take 1000 mcg sublingual methylcobalamin per day.

good to see your bloodwork posted. i try to aim for serum ferritin 80-100. a regular serving of lentil soup with an added cup (boiled 1 min then drained) of spinach and some high vit c red pepper could help get both serum ferritin and magnesium moving in the right direction.
for iron supplement, there's floravit too. i have some of that in the fridge, nice and plant-y

magnesium 0.81 is not good at all; try to aim for 0.95-1.1 range, via a supplement if you have to. to get enough magnesium (and other nutrients) from high volume greens, you need to boil them for 1-3 mins depending on type, then drain, or you can end up with too much oxalic acid in your system. i've done that to myself before, with foods high in oxalic acid, and that *does* hurt.
did i see australia? are you close to the ocean? if not, epsom salts baths can help you get your mag levels up. if you decide to supplement, magnesium glycinate is my fave. you could try it at approx 10mg per kg body weight per day for a week, see how you go :) if it's too much, could dial it back to 7mg per kg per day.

your uric acid looks good, aligns with healthy controls. folks with ms average 0.19 mmol/l or in my lab's language, 194 umol/l. 160s in relapse, 230s in remission.

can you clarify re not having been tested for zinc, yet knowing you have always been zinc deficient? did some long term signs or symptoms suddenly make sense or something?
babies are born with hugely variable zinc stores in their livers. how you are looked after as a child and how you live as an adult can build your original zinc balance up, maintain, or deplete. vegan diet is definitely on the deplete end of that spectrum, what with all the low bioavailability plus interference from phytates and such. extra careful attention is needed, to ensure you exceed mainstream intake recommendations by 30%. all that said though, i'm still curious what has given you this certainty about your zinc status, prior to testing?

i can't say i ever had pain when i was at my most severely zinc deficient. for me it was all about the cognitive losses. i got an outstanding work evaluation, but i could barely drive - major spatial issues. that said zinc is essential and intrinsic to SO MANY things in your body. i couldn't begin to say how your system is assigning available zinc and other resources from food intake, and how it all might be interacting to affect your day to day life.

one thing i might expect from a veg/vegan diet would be high copper. high copper and low zinc is a terrible combination. if you end up getting serum zinc and serum copper tested, the ratio is key. cu:zn should be in the 0.7-1.0 range, if you flip it you want zn:cu around 1.1. for straight levels, i like to keep zinc right up at the top of my local lab's normal range, ie around 18 - 18.5 umol/L, and the copper at around 17 - 17.5 umol/L.

re zinc supplements, i use powder capsules properly balanced w copper myself. but these lozenges could be a sort of interim test, until you hit the lab. they are chalky texture-wise but taste nice.. as long as you need zinc :D taste and smell depends on zinc, once you have had enough, these lozenges start to leave a metallic aftertaste. that's your sensory perception starting to work again lol http://www.quantumhealth.com/collection ... -raspberry
not a substitute for lab work, but interesting.
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
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Re: Hello and wanting feedback

Postby queengucci » Sat Jan 28, 2017 5:06 pm

Hi Jimmy

You are incredibly positive for a person with health issues, it makes me try and stop feeling so sorry for myself listening to you. I have taken on board all of your nutritional comments and I am going for a full blood screening to test everything in my body next week from a Dr that specialises in this sort of thing.

I am sorry, I must sound like such a whinger....

With Zinc it has never shown up in a blood test as a deficiency but I am not sure I have been tested for it but a few times my naturopath has told me I am very low because I have large, white spots on my fingers nails and when I take a high zinc supplement they disappear and I feel a little different. Having said that, I have no white spots at the moment.

Yesterday the flare/attack whatever I can call it that lasted almost 8 weeks has started to subsided. During the flare/attack, I could not pinpoint where I was in pain because my entire body was pulsating, painful and tingling everywhere, my mind was so confused and actually, I felt very tight in the throat almost like my glands were swollen, I was also having to pee very frequently but the funny thing was I was not drinking much water and it was large streams (sorry to be graphic haha).

Now the pain is subsiding, I can say that I am left feeling like every large muscle in my body is super tight, when I say long muscles I am not one for using correct terms :).. I mean all of the muscles in my long limbs, so I am finding it hard to move my legs and arms. This is not from numbing or loss of use but more pain. If I press or push hard on the muscles it really hurts . My finger tips feel stiff and pulsating and I didn't even realise until now that I had lost feeling a lot of feeling in all of my fingers tips over the weeks and they are hurting now like I have knocked them everywhere because I didnt have full feeling in them for the last few months. My joints are killing me but I am thinking now that I can pinpoint things that it isn't my joints at all, in fact it is the muscles over the joint area.

Remember, I had this same attack but far, far worse in London 12 years ago and I was diagnosed with Rheumatoid Arthritis (which I never believed). They put me on heavy drugs for years which I refused after a while and now, they have blood tested me for every anti body, swelling and x-rayed my hands and said that I should never have been diagnosed with this to start with and I definitely do not have any of it and should never have been put on the drugs.

I saw my Dr earlier in the week and burst into tears because I have struggled with working and my two small children. He said to me that he cannot help me anymore and he has no idea what is wrong with me :(

I also want to add that I had heavy tinging in my face, ears, gums and eyeballs for weeks and I had some acupuncture last week that has almost stopped it..

My Dr does not want to hear that I could have neurological problems or MS, he wont consider it for one moment and I guess this doesn't put my mind to rest at all being brushed off and what path I should now take.

I am not asking anyone to diagnose me, I guess my main question is... from what I have read MS causes issues in SPECIFIC spots of your body where the lesion is. I have pain in every joint and muscle and tingling all over that can shift, I also have swishing sounds in my ears. Does this sound like it "could" be MS or are the symptoms not usual for this illness?

I asked him to test me for Lyme disease but he said there is no specific test.

Thank you for listening to my long story :)
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Re: Hello and wanting feedback

Postby jimmylegs » Sat Jan 28, 2017 7:12 pm

hey if we can make things better in any small way, awesome :) please do keep a copy of your results so that you can interpret yourself!
re zinc, omg yes the white spots!! one day at my old job i saw this one kid on a field trip, and all his fingernails on both hands were just covered in white spots. nothing to be done :P
my fingernails are my early warning system lol. not white spot, little pits. at my worst, they would just come away from the base. actually my left big toe nail is telling me to get my act together lately, it has come away just a little on one side. but the fingernails are all smooth as silk. when i was a vain girly girl teenager, i used to have to file the pits out of my nails and then put nail polish on just so they would look normal. now, they are just fine. it's so weird to think how far back these issues go. glad you are currently 'spotless' :D

i can think of only one standout ms patient case involving severe chronic pain and spasticity. this was a person on 10K IU vit d3 per day.
he wrote in 2011 to say he was trying magnesium glycinate, 400mg per day. he said any more gave him diarrhea, which did make me wonder if it was really mag glycinate he was on.
he wrote again in 2012 to say that after a year supplementing, his serum mag level was only 0.657 mmol/l or 1.6 mg/dl which is GARBAGE. and another possible indicator that we were not talking about magnesium glycinate.
he also said the docs kept telling him his potassium was low, which is another clue to magnesium deficiency - see: https://www.ncbi.nlm.nih.gov/pubmed/1728927
i have a note saying he took a magnesium in the morning, then 10K d3 at lunch, and another magnesium at night. it just couldn't have been the right form, at a high enough dose, or at the right timing, to deal with 10K D3 throughout. i wish we had been able to work through all of that more thoroughly. i know how brutal it was for me, when my mag was out of whack from high dosing d3. really freaking scary as hell. that is not a cheerful tale but worthwhile perspective i think. fwiw information-wise, lucky i still have things kicking around in my in box from way back then. and at least you know right now that with your level at 0.81, that you are not in quite such dire straits, even though you still do have lots of room for improvement.
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
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Re: Hello and wanting feedback

Postby queengucci » Sat Jan 28, 2017 7:42 pm

Hello

I just had a giggle with your girl nails comment because I assumed you were a male from your profile name :)

No one on here really wants to commit to saying my symptoms could be or couldn't be but my Dr wont even entertain it - I guess I am wondering if any of you would force a referral to a neuro? I have been in so much pain and so confused I feel like I do not even know what has happened now or even where to start. My brain hurts.
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Re: Hello and wanting feedback

Postby jimmylegs » Sat Jan 28, 2017 8:34 pm

lol :D clarification:
https://www.youtube.com/watch?v=NF_jThhciOQ
related fave:
https://www.youtube.com/watch?v=U1iCZpFMYd0
seinfeld and simpsons. the legacy of a decade with my ex haha

you know my opinion: focus on optimizing health. as a vegan, sort out your essential nutrients, including the magnesium you know is low, AND which is also known to be low in fibro, WHICH in turn your docs *do* think you have, and then see where you are :)
as a past vegan i am no stranger to trying to make reality bend to my opinion, but it will probably take some doing to find a doc who will get on board. at least the mainstream ms grinder won't make you pay attention to your fundamental nutritional status!

OMG lol youtube just auto-played into this one with another jimmy character:
https://www.youtube.com/watch?v=8f2P5yJFQKw
must be from lisa's vegetarian episode :lol:
at one time that probably offended me, consider yourself forwarned 3:)
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
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Re: Hello and wanting feedback

Postby queengucci » Sat Jan 28, 2017 8:55 pm

Hahaha that clip was pretty accurate...you made me giggle..... but those poor cows in the feedlots, it breaks my heart.

Fibre being lower in a Vegan diet? I have never heard of that? my bowel movements are 3 times a day compared to non vegan of once a day. From what I have read having high fibre is the biggest benefit to a Vegan diet.

I have actually never eaten red meat, pork or consumed much dairy or eggs. That only thing I have given up in the last 14 months is chicken and of course, any processed/packaged food with diary. Who knows, maybe there is a connection. All I know is that, there are millions of vegans on this planet living healthy lives that eat nothing but processed rubbish :(

I am going to see an excellent Dr next week that looks at nutrition the way you discuss it and also heavy metals and toxins.
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Re: Hello and wanting feedback

Postby jimmylegs » Sat Jan 28, 2017 9:57 pm

me too. i had to switch to a small local family farm that was on my commute at the time. in their first year i had a share in a specific cow. i had never before been that interested in whether there was enough rain to make lots of grass for them to munch on in the pasture!
no no, not fiber, fibrO as in fibromyalgia. hopefully i'm not mixing up ppl and threads!
it's weird, with vegans it's the processed rubbish and its accompanying fortification that allows the illusion to persist. certainly did with me. it was specifically when i canned the processed packaged fake vegan foods, that everything went south fast and i ended up diagnosed within a couple of years.
anyhoo, hope you make great progress with the doc! the right nutrient balance even helps sort out your body's natural detox processes. it's kind of awesome :D
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
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Re: Hello and wanting feedback

Postby queengucci » Sat Jan 28, 2017 11:33 pm

Hello

Yeah there is a lot to why people go Vegan...

Hahahaha it was probably me that mixed up the fibro not you :)

The thing is, I have never liked meat so even the processed food does not interest me. I know you feel it was when you stopped processed food your health went down hill but maybe if you were eating processed food, it had already caused an issued. I also believe that anyone whether they are vegan, vegetarian, Omni, junk food addict whatever, they are still suseptible to health problems and nutritional deficiencies which is evident considering most of the world eat meat but people are very ill.

There is much reason now that meat today carries 40% less protein and other nutrients and has double the fat. I truly believe what we are doing to our food even the sprays on vegetables is devastating.

Thanks for all of your wisdom and keeping me half sane. I will let you know how I go with the full nutritional blood testing.
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Re: Hello and wanting feedback

Postby NHE » Sun Jan 29, 2017 12:48 am

jimmylegs wrote:OMG lol youtube just auto-played into this one with another jimmy character:
https://www.youtube.com/watch?v=8f2P5yJFQKw
must be from lisa's vegetarian episode :lol:
at one time that probably offended me, consider yourself forwarned 3:)


Driving through Southern California on I-5 one encounters a large feed lot, The Harris Feeding Company. It's about a quarter mile wide and half a mile long and packed with cows. One begins to smell it from about 6-8 miles away. It's a brown stain on the Earth which can easily be found by satellite. It's a mess. Thanks can surely go to McDonald's.

https://www.google.com/maps/@36.304992, ... a=!3m1!1e3
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Re: Hello and wanting feedback

Postby queengucci » Sun Jan 29, 2017 1:00 am

Indeed, intensive farming is terrible for our planet. I live in Australia in an area closest to the Live Export Port. My heart stops as I drive through some roads watching the trucks - such young cattle and they spend up to 5 weeks at sea, then await awful animal welfare conditions. This is was started my journey as an animal activist and volunteering.

If anyone has any opinions about my symptoms please tell me.. I know MS is a different animal for every one but surely someone can tell me if it can suddenly affect every single muscle in your body with extreme pain and body wide tingling including the face, eyeballs and ears drums on both sides.

I hope you are all feeling well today

Thanks
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Re: Hello and wanting feedback

Postby Snoopy » Sun Jan 29, 2017 5:15 am

queengucci wrote:If anyone has any opinions about my symptoms please tell me.. I know MS is a different animal for every one but surely someone can tell me if it can suddenly affect every single muscle in your body with extreme pain and body wide tingling including the face, eyeballs and ears drums on both sides.


Multiple Sclerosis does not cause body wide symptoms. Based on that and your description my opinion is ---- what you are experiencing is not Multiple Sclerosis. Note: I am not a medical professional.
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Re: Hello and wanting feedback

Postby NHE » Sun Jan 29, 2017 5:17 am

queengucci wrote:If anyone has any opinions about my symptoms please tell me.. I know MS is a different animal for every one but surely someone can tell me if it can suddenly affect every single muscle in your body with extreme pain and body wide tingling including the face, eyeballs and ears drums on both sides.


Trigeminal neuralgia can affect the face and head muscles. However, it wouldn't explain your other body pains.
https://www.ninds.nih.gov/Disorders/Pat ... Fact-Sheet
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Re: Hello and wanting feedback

Postby jimmylegs » Sun Jan 29, 2017 7:50 am

just googled
all over pain
and it went straight to fibro, as your docs have also suggested.

we're back to ensuring adequate magnesium and zinc based on the available nutritional science in that dept.

it is true qc, i was vegan with an increasingly limited and largely whole food diet for a very long time before that final transition off processed foods such as soy dairy, and the veggie dogs which i viewed as a b12 supplement (if i had been able to get through 2 per day, which i was not even close to managing).
and it is also true that there are many different routes to similar nutrient issues. there is some logic to reducing processing. for instance in the milling of rice. better to eat whole grain brown rice than polished etc. so many nutrients are lost in polishing although interestingly zinc is distributed more evenly through the grain so you only lose a small percentage. to me the loss through milling is not worth it, the other nutrients are essential as well.
there is no logic whatsoever to me in the suggestion that packaged foods, virtually the only source of fortification in my routine, were responsible for causing my issues, only to manifest over a year after i stopped using them. especially when my b12 level could not be detected during that time.
i'll look forward to seeing results from your labs, especially serum magnesium, serum zinc, serum d3, serum copper and serum ferritin when you have them. do remember to wash out any supplements for a week or so before you have the blood drawn. that will give a more accurate picture of background levels.
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
User avatar
jimmylegs
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Posts: 10762
Joined: Sat Mar 11, 2006 3:00 pm

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