nutrition and ccsvi

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jimmylegs
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nutrition and ccsvi

Post by jimmylegs » Wed Dec 19, 2018 8:52 am

i can't tell if you have received the msg above. underscoring here that i am not presenting rcvs as an idea for your neuro's consideration as a dx.
i'm not personally about about finding diagnoses. i have a more preventative headspace, via seeking to rule out any possible nutritional/lifestyle contributions that may be clouding the diagnostic picture.
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!

ricleal
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Re: CCSVI procedure failed...

Post by ricleal » Wed Dec 19, 2018 10:25 am

jimmylegs wrote:i can't tell if you have received the msg above.
Yes I did.
I have been investigating it. Also Posterior reversible encephalopathy syndrome (PRES).
They both give the same symptoms and are difficult to diagnose.

I do have lesions on my brain - consistent with MS (that's what the report says). No evolution of my MRI since last year. My CTA is normal. I looked at the images to see if I couldn't see any narrowing of the arteries... Nothing my untrained eye could see.

The symptoms are more of trigeminal neuralgia now. In the last 2 days the pain has been radiating to my face and eyebrow... The carbamazepine is still pretty efficient. 200mg give peace for 6 hours....

I have been following Whole Food Plant Based + wild caught small fish diet. I do 10 000 UI of vitamin D + 400mg of magnesium + B50 + ALA 1200mg. This in the last 18 months.

I will start soon LDN and later probably Coimbra Protocol. I'm going to see my neurologist mid-January. Until then I want to learn as much as possible...

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Re: CCSVI procedure failed...

Post by jimmylegs » Wed Dec 19, 2018 10:44 am

thx for checking in :)

two questions:
1. exactly what chemical form of magnesium have you been using (link to label if you can pls)
2. how do you time its daily intake wrt the 10K vit d3?

we had a past member taking 10K d3 daily with only 400mg of mag per day, bloodwork showed he remained mag deficient after a year. this issue was never properly addressed and in the end he committed suicide due to the chronic spasticity and pain.

to date i am not a fan of the coimbra protocol AT ALL. have run across at least one suffering user here, whose "protocol 'doctor' " didn't address cofactors at all.

further, i have seen no evidence of anyone evaluating the degree to which high dose users are just excreting d3.
i've only seen one study to date which recorded high d3 levels near wastewater outflows, with associated calcification and deformity impacts on local wildlife. haven't seen the connection made yet, to the recent high dosing obsession.
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!

ricleal
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Joined: Wed Jan 17, 2018 11:19 am

Re: CCSVI procedure failed...

Post by ricleal » Wed Dec 19, 2018 11:32 am

jimmylegs wrote:thx for checking in :)
1. exactly what chemical form of magnesium have you been using (link to label if you can pls)
2. how do you time its daily intake wrt the 10K vit d3?
Thanks for the heads up. I'm quite worried about the Coimbra protocol (CP) because it has to be well monitored...

1. I'm taking Magnesium glycinate lysinate chelate. Apparently not the best I know. The availability is like 12%. Advice required here.
2. I take the D3 with my breakfast (a green smoothie with flaxseeds + flaxseed oil). I usually fast for 12-14 hours.

What I know about the CP I read from here: http://www.vitamindprotocol.com/dr.-coi ... tocol.html
Just vit K2 is missing from the list...

I'm worried because after a while at D3 10K IU I have to get back to 5K or even stop it, because my sleep starts suffering from it. Melatonin production is inversely proportional to D3 intake....

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Re: CCSVI procedure failed...

Post by jimmylegs » Wed Dec 19, 2018 12:21 pm

ok decent info.

re d3 megadosing i am not satisfied with any protocol info seen to date, not least because next to nothing has been published in a creditable academic publication. i also come down firmly in opposition to the idea that people must megadose d3 simply because their serum dose response is less than desired. actual published science has demonstrated the clear relationship between cofactor status and d3 dose response.

yes re monitoring is key. this applies to anything and is most readily taken on at a personal level via attention to diet and lifestyle including adequate uv exposure for example and/or compensatory (not excessive) dietary intakes.

i continue to learn about magnesium glycinate. per my own experience, it's a form that allows me to absorb more elemental mag without the undesirable laxative effect.
for a vendor, this page seems to have good content http://www.magnesium.ca/faq/
i use a product which says pure mag glycinate on the box, but the fine print on the label indicates that it is a blend. i'm okay with it; it works.

re mag always divide the daily dose. take half *with* d3 and half well away.
very important for reasons i have detailed many times here at tims.
that means you would do well to take some magnesium in the morning.
give it a few mins on its own, then follow with the d3 green smoothie.
later on, take more magnesium all on its own.
again empty stomach, followed up with some food whether a meal or a snack.
please let me know if anything about this is unclear, because i find timing can be a persistent common issue among people who have already learned it and should know better.

i strongly recommend monitoring your serum mag level at a minimum, to get a sense of whether you are going to have a decent dose response to d3 intake.
also, monitoring your serum d3 level so as not to exceed a beneficial level.
regardless of claims, there is no truly long term safety data on multi-year megadosing in large groups. a handful of case studies considering a very thin array of possible safety impacts should not satisfy your personal self-preservation instincts.

it is my understanding that if in the us, you can readily order bloodwork requisitions via online vendors such as lifeextension. these providers seem to be affordable in comparison to private services in other jurisdictions such as the uk and canada. as long as you order the correct specific test and understand how to interpret the result, all good.

i don't think you should worry AT ALL about being unable to sustain 10K long term. your own experience of undesirable side effects is enough to make the case.

let me know if all of that makes sense :)
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!

ricleal
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Re: CCSVI procedure failed...

Post by ricleal » Wed Dec 19, 2018 12:40 pm

jimmylegs wrote:let me know if all of that makes sense :)
Perfect!!! Thanks a lot :)

I have a chat soon with a doctor for the Coimbra Protocol (https://www.doctorpinkleton.com/coimbra/).
On the website says "Doctor Pinkleton was the 5th doctor in the United States to be trained in the protocol." I have no idea where she learned about it, the exams she does, complements to the Vit D... etc... Those are my question before "embracing" something dangerous as this protocol...

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Re: CCSVI procedure failed...

Post by jimmylegs » Wed Dec 19, 2018 1:26 pm

not convinced re pinkleton's ND credentials. alma mater:
https://en.wikipedia.org/wiki/Bastyr_University
https://en.wikipedia.org/wiki/Bastyr_Un ... #Criticism (if you check the first link, nobody waited for the criticism section to get started on critical content).

my non-vast xp with NDs includes one good, one mixed and one bad interaction. nonetheless, am taking a friend to an ND appt on friday. strictly a means to an end (expensive but at least insured). the friend in question didn't want to ask the family doc for four essential nutrient tests, and to date there's been only partial success via other mainstream local options. so basically as a plan c, i connected my friend with this recent ND (for me, the middle/mixed interaction of over a decade ago), who *may* in turn remember me when we show up. if so, am hoping the 'NDBS' will be reduced to a minimum!! (update - just googled. smh.)
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!

ricleal
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Joined: Wed Jan 17, 2018 11:19 am

Re: CCSVI procedure failed...

Post by ricleal » Thu Dec 20, 2018 5:56 am

jimmylegs wrote: (update - just googled. smh.)
LOL!!! I did have a laugh!
Thanks for checking her background. More news soon ;)

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Re: CCSVI procedure failed...

Post by jimmylegs » Thu Dec 20, 2018 8:10 am

sounds good :) wish us luck getting out of the office tomorrow pm with a plain old requisition - and nothing more in additional expensive time/treatment commitments or product sales!
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!

ricleal
Getting to Know You...
Posts: 18
Joined: Wed Jan 17, 2018 11:19 am

Re: CCSVI procedure failed...

Post by ricleal » Thu Dec 20, 2018 8:40 am

jimmylegs wrote:sounds good :) wish us luck getting out of the office tomorrow pm with a plain old requisition - and nothing more in additional expensive time/treatment commitments or product sales!
Good luck!!! I will probably leave my chiropractor because of this "treatment commitment" stuff... Once more the same conversation and I quit!
Hope everything goes for the best!!

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Re: CCSVI procedure failed...

Post by jimmylegs » Thu Dec 20, 2018 4:18 pm

thx :)
ugh yea the upsell routine sucks no matter the context.
here the bar keeps shifting. now i think we don't have an appointment tomorrow at all!
for easy bloodwork, the states have it good.
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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jimmylegs
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Re: CCSVI procedure failed...

Post by jimmylegs » Fri Dec 21, 2018 7:26 am

update. definitely no ND appointment today. too much screening BS. you can't question the $240 pre-qualifying process, unless you want to risk access this ND's exclusive in-club of patients. all new to me; guess the figurative bars were not as high my first time through that practice.
as for my vulnerable friend, after bad ND xp #2 we managed to get things circled back to the family doc for a plain old lab req, with tests paid privately if need be. hopefully efforts will meet with success in the new year.
hope you don't have to deal with any of the anticipated chiropractor bs!
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!

ricleal
Getting to Know You...
Posts: 18
Joined: Wed Jan 17, 2018 11:19 am

Re: CCSVI procedure failed...

Post by ricleal » Fri Dec 21, 2018 8:17 am

My experience with ND is very limited. I talked with the one above and decided to go ahead with the CP.
Well... Here my "food" for the next 3 months. I just realised I have no idea when to take the stuff (besides Mg and Vit D - you told me already :)
Do you have any idea when to take the other cofactors? Are they really necessary? Like the B-Complex? Just don't want to pollute my body...

Vitamin D3 60000.0 IU Once a day
Chelated Magnesium 100.0 mg 4 times a day
Riboflavin 100.0 mg Twice a day
B-Complex 1.0 cap(s) Once a day
Chelated Chromium 200.0 mcg Twice a day - Take with a meal.
Selenium 200.0 mcg Once a day
Choline & Inositol 500.0 mg (Choline 250mg from Choline Bitartrate + Inositol 250mg) Once a day
Zinc picolinate with copper 25.0 mg (Zinc (picolinate) 25 mg + Copper (chelate) 2.5 m) Once a day

Any advice is welcome :)

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Re: CCSVI procedure failed...

Post by jimmylegs » Fri Dec 21, 2018 10:45 am

ok here is my response from a skeptical perspective (afraid i can't answer effectively, just have a bunch of questions!).

1 vitamin d3.
a. what is the rationale for 60K IU per day.
b. what is the proposed duration for this intake (does it stop at 3mo and if so what is the rationale there).
c. what is the target d3 level in serum
d. what is the monitoring plan, eg frequency of serum d3 level and urinary/fecal excretion tests.
e. what is the prescription for outdoor and dietary d3 exposure

2. magnesium
a. what is the starting serum level
b. what is the target level in serum
c. what are the existing healthy, complex multinutrient-dense whole food sources underpinning this planned isolated supplemental intake

3. zinc picolinate w copper
a. what are the starting serum levels.
b. what are the serum level/ratio targets.
c. what are the main food sources.
d. how will supp/diet interactions be managed.

4. everything else (ie riboflavin (B2), b-complex, chromium, selenium, choline&inositol)
a. what are the specific rationales, including research citations, for including these
b. re selenium, why not from equivalent whole food sources (i have posted the experimental serum selenium dose response to dietary selenium intakes)
c. what is the serum selenium target
d. why nothing on fatty acids?

general cofactor info
i wish these sites' pages on d3 cofactors included academic references
https://www.vitamindcouncil.org/about-v ... B0v3dtKi70
https://vitamindwiki.com/Vitamin+D+Cofa ... a+nutshell

at least this site gives some references, but it's not the right resource for in text citations:
http://www.whfoods.com/genpage.php?tnam ... teractions

i am completely fine with taking on that list one single question at a time.

ps at some stage, might need to move this info over to a more closely aligned non-invasive topic!
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!

ricleal
Getting to Know You...
Posts: 18
Joined: Wed Jan 17, 2018 11:19 am

Re: CCSVI procedure failed...

Post by ricleal » Fri Dec 21, 2018 11:58 am

jimmylegs wrote:ok here is my response from a skeptical perspective (afraid i can't answer effectively, just have a bunch of questions!).

i am completely fine with taking on that list one single question at a time.

ps at some stage, might need to move this info over to a more closely aligned non-invasive topic!
Thanks for the references!
She is going to send me only for PTH test :( I guess there's nothing else being tested... I'm affraid there's no serum level of any of the co-factors.

For fatty acids I guess I eat fish a few times a week... That's what I would say.

I have to read more before jumping into this (including previous threads).

The last few posts should be moved to different post. If you have permissions for that go ahead!

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