Phlebotomy anyone?

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
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jimmylegs
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Post by jimmylegs »

shye could you please describe your chelation therapy? perhaps via private message?
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Post by jimmylegs »

L your tachycardia is most likely related to magnesium status. especially since you report increased effects after caffeine and alcohol. pistachios are rich in magnesium.

if you don't already know this, i was a vegan for 15 years prior to diagnosis. i resisted all supplements.

after dx i started reading, initially to discover how to supplement to be the healthiest vegan possible. i concluded that science did not know enough about nutrition to safely advise a vegan on optimal alternatives.

given my perceived lack of time to do research while my body tried to break up with me, i decided that a return to a biologically appropriate diet would be the wisest course. i did the industrial food boycott for 15 years and now i just try to make better food choices, eg organic as often as possible even though i can't afford 100% organic. and i do eat tons of veggies, including broccoli :)

as a vegan and an ms patient you are most likely zinc deficient. the zinc taste test might be an option for you since you are needle-phobic. (i used to be too, SOOO over it obviously LOL)

zinc deficiency impairs iron handling.

as a vegan you are probably low in iron if not outright deficient. i would not necessarily rest on the absence of tachycardia to reassure you of adequate iron status, but the vitamin C intake should hopefully be helping you absorb whatever non-heme iron is in your diet.

if you can bring yourself to do some bloodwork i highly recommend figuring out your status of nutrients known to be low in vegans and ms patients.
Thanks everyone.

No, all this time I had no iron supplements. I'm a vegan who doesn't eat broccoli Well, almost a vegan. There was pretty much no iron in my diet.

I was having bouts of tachycardia - a fast heart rate. Caffeine and alcohol made it more likely it seemed.

This got worse a couple of times when I tried agents which chelate iron. Really terrible actually. Green tea never brought on problems, neither did horse chestnut. IP6 was dreadful and Milk Thistle was even worse (I conclude that these two are very effective chelators of iron.)

Then I put two and two together. Both caffeine and alcohol (in moderate amounts) chelate iron. That was quite a long time ago now, quite a few months ago.

Now I have a big handful of pistachios (high iron content) with a vitamin C tablet daily. No more tachycardia, ever. I'm absolutely fine with caffeine and alcohol. Since I realised that I was anaemic I have had no problems, except for once when I hadn't bothered with the vitamin C + pistachio nuts for a week.

So, I conclude, that a low iron level in the blood doesn't correlate with the iron level in the brain. But that's only a guess of course.

Perhaps if I could have persevered with iP6 (which crosses the blood brain barrier but I don't think that Milk Thistle does) things would be different. So my ill informed advice would be, take iP6 and see what happens.

I was going to get my iron levels tested, I even got a blood test form from my GP, but I thought that there was no point since I now supplement my diet and my symptoms disappear as long as I continue to do so.
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Post by jimmylegs »

okay... 10th consecutive post on this thread.. time to step away! will be back with info on ip6 later. in the meantine anyone interested might be able to search for posts by me with IP6 as a keyword.
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Post by L »

jimmylegs wrote:if you can bring yourself to do some bloodwork i highly recommend figuring out your status of nutrients known to be low in vegans and ms patients.
I'm due some blood tests next month so I'll request these too. Thanks JL.
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Post by L »

shye wrote:L says
with iP6 (which crosses the blood brain barrier
Does it? Have never seen any report of this. If you have a source for this info, please post....thanks
Wikipedia says
It is also known that, at least in rodents, phytic acid crosses the blood-brain barrier
So, probably (or possibly)..
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Post by jimmylegs »

tracked down the previous ip6 discussion - no wonder it made you feel like crap!!

i hope no-one is taking ip6 for their ms. it's the kind of thing that drives zinc down.

ms-ers are low in zinc, on average, in the first place - and vegans are likely to be especially low.

it's zinc that helps your body handle iron - iron dysregulation occurs in zinc deficiency.

the info:
http://www.thisisms.com/ftopicp-80953.html#80953
Jimmy - have you checked out the ip6 idea? Also, there is a lot of info on the net about "excessive zinc causing MS", do you think thats a bunch of bunk?
Thanks for your rsearch!
http://www.thisisms.com/ftopicp-81019.html#81019
jay, you're welcome, and no i have not checked out the ip6 idea. i think too much zinc could be as bad as too little. statistically in the studies i have seen ms patient values are lower on average for zinc. that's not to say i haven't heard about clusters in industrial zinc locations..
http://www.thisisms.com/ftopicp-81067.html#81067
ok jay i looked up ip6 and now that i know that is phytic acid, yes i know what that is - for starters it's a form of phosphorus that is not readily bioavailable, high phytate foods etc, which can deplete important nutrients. is that what you meant by the ip6 idea?
http://www.thisisms.com/ftopicp-81084.html#81084
Check out the other threads but there is a lot of talk of using this to get rid of the iron in the brain, kind of a 'super green tea'!
http://www.thisisms.com/ftopicp-81091.html#81091
ohhhh.. no i have read a bit about it before now that i'm looking.. zinc helps regulate iron and has about 200 other things to help out with in the body.. meanwhile ip6 may strip iron, but might also strip calcium, magnesium, zinc, all the things i try desperately to ADD to my dietary intake each day.. think i'll give that one a miss for the time being :S
JL
Last edited by jimmylegs on Mon Sep 06, 2010 7:04 am, edited 1 time in total.
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Post by jimmylegs »

L i will pm you a list of tests and target values.

i expect most of your results will come back inside the normal range. the normal range is misleading as it contains both sick and healthy people in many cases.

therefore you will need to ask for numbers with units instead of just hearing 'everything's normal'.

what i will send you are optimal levels seen in studies of 'healthy controls'.
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Post by shye »

Bethr-
Can't seem to find the thread you posted the angiogenesis info on--
would like to see the discussion on it--
could you let me know where you posted it?
Thanks
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Post by Bethr »

Sorry Shye, busy weekend with my daughters 11yr birthday party over the weekend, so missed your earlier post.

I posted here http://www.thisisms.com/ftopicp-131991- ... tml#131991 but that fizzed so should probably have added it to this older thread http://www.thisisms.com/ftopicp-113222- ... tml#113222

By the way, I've booked for a full phleb tomorrow. I'm so stiff and sore in my knees and hips I felt I had to go and do it. I'm finding it hard to stay asleep through the night.
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Post by jimmylegs »

hey bethr, as an aside from the iron, i'm curious - what are your d3 and magnesium levels, if i may ask?
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Post by shye »

thanks Bethr
good luck with the phleb--let us know how it goes.
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Post by Bethr »

jimmylegs wrote:hey bethr, as an aside from the iron, i'm curious - what are your d3 and magnesium levels, if i may ask?
Not sure, my Drs. don't seem to interested in these things!
I've just started taking magnesium, zinc, and B6. I'm looking at getting some B12 also.
I am slowly changing my thinking on taking supplements.
Is D3, vitamin D3? Lot's to learn in this Dept.

All my symptoms follow my menstrual cycle. My painful hips & knees, muscle pain, and fatigue usually resolve once I menstruate (or if I give blood, even a blood test suffices for a short week).
I'm right at that point and I'm feeling a bit better.
I have two specialists who think I have a type of Porphyria, which would explain the monthly cycles I go through. They've always been there, but were always put down to PMT :lol: but now 10X worse.
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Post by jimmylegs »

hi bethr, sad re docs :( i am lucky to at least have cooperative if not proactive health care hehehe

i'm glad to hear you are starting to explore nutritional health management :D

curious: what form of magnesium are you taking? how recent is just started? how much each of mag, zinc and b6 do you take daily?

yes, d3 is vitamin d3.

are pain and fatigue you listed pretty much all of your symptoms?

i started a bit of a read on porphyria. looks like your liver is in the mix. the zinc will probably help you out in that dept.

do you know the target serum levels for things like d3, zinc and magnesium? i PM'd them to L, i can send the same to you if you like.

knowing 'optimal' saves you hearing 'normal' and being dismissed!
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Post by Bethr »

It's funny how I'm coming around to supplements. I always worked on my horses nutrition over the years, but neglected my own.
I suppose it must work as my horse is 35 years old and still in good nick for her age :lol:

Now what I'm taking:
Zinc, B6 Mag combined in one pill.
Zinc (sulphate) 9mg
Magnesium Oxide 30mg
B6 (pyridoxine hydrochloride) 25mg

I'm also taking Efalex caps(as it worked wonders for my son when he had cognitive problems years ago)

Folic Acid 0.8mg (APO)

I started all this around 4-5 weeks ago.

I probably have to be careful and check out what is Porph safe also.
I'm on the improve overall, two steps forward and one backwards type progress, but ultimately positive!
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Post by Bethr »

Oh yes, please send through the requirements on a PM.
I don't know how I'll get myself tested, but will work on it.
I may feel out my new doctor to see how he feels about it, don't want to freak him out too much. The suspected Porphyria and bloodletting regime put them on edge somewhat, ie: is this women mad! :lol:
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