I am reading that a study from the University of Oregon Mendical School says plant based diet benefits MS. Is anyone vegan or vegetarian here? If yes, how is it working for you?
Here is the reference.
http://www.emaxhealth.com/1275/how-plan ... -sclerosis
Try plant based diet: new study
Re: Try plant based diet: new study
Vitamin B12 is only available from food via animal products. A vegan or vegetarian diet will not supply B12 which can lead to a deficiency over time. Therefore, if someone follows this type of diet, then they'll need to supplement with B12 or risk experiencing B12 deficiency induced demyelination in the brain and spinal cord.ncarnet wrote:I am reading that a study from the University of Oregon Mendical School says plant based diet benefits MS. Is anyone vegan or vegetarian here? If yes, how is it working for you?
Please see the following topic for more information.
http://www.thisisms.com/forum/natural-a ... 24857.html
With that said, I don't follow a vegetarian diet, but I do eat considerably more vegetables than I used to and I find that helpful.
Re: Try plant based diet: new study
For another (opposite) perspective, I strongly recommend you read The Wahls Protocol book.
FWIW, I have been on a very, very high fat diet eating good fats from grass fed meat/wild caught seafood diet with very minimal home grown greens (pretty much my only source of vegetables) and virtually no fruits for over 2 1/2 years and am doing very, very well overall all things considered.
All diets seem to work for some but not all which says a lot to me.
FWIW, I have been on a very, very high fat diet eating good fats from grass fed meat/wild caught seafood diet with very minimal home grown greens (pretty much my only source of vegetables) and virtually no fruits for over 2 1/2 years and am doing very, very well overall all things considered.
All diets seem to work for some but not all which says a lot to me.
Last edited by ElliotB on Sun Oct 02, 2016 5:47 pm, edited 3 times in total.
Re: Try plant based diet: new study
Hi,
What strikes me as common about the variety of "successful" diets is they are all low in refined sugar. A Wahls diet is diametrically opposite to a Jelinik/(Swank) diet in terms of animal fats yet both proclaim some success. What they have in common is natural foods and very little sugar. Jelinik needs vitamin D supplements because he is effectively running a low cholesterol diet and you need cholesterol to make vitamin D.
As hormones control almost every metabolic event the things that influence them become critical. Food choices are the obvious starting point. Barry Sears who was the nutritional advisor to several US Olympic teams focused on this in his zone diets.
Insulin is the only hormone that prevents our blood sugar from rising too high whilst glucagon-cortisol,adrenaline, noradrenaline and human growth hormone prevent it from falling too low. It shows how powerful Insulin is that all those other hormones are needed to counterbalance it.
Insulin supplies sugar to muscles. When they have enough the balance goes to fat cells. Sugar is probably a more important swing factor than ingested fat. If you have too much sugar your insulin levels are stimulated. High insulin can narrow artery walls, raise blood pressure and signal kidneys to hold on to more salt.
The excess sugar goes goes to fat cells until they are exhausted by a sugar heavy (and high carb) diet. You start to find it difficult to lose weight and the fat cells start to release chemicals that contribute to inflammation. You swing towards insulin resistance and the beneficial effects of insulin disappear to be replaced by inflammatory consequences. You are pushed towards hypertension, diabetes and potentially obesity. All the diets that seem to have some degree of success are ketogenic. (ie The body burns fats rather than carbohydrates)
None of this problem with sugar is exclusive to us and is common in huge swags of populations influencing heart disease in particular. What we need to watch for is controlling inflammation. All these diets will help.
A good, readable book on this is "The great cholesterol myth" by Jonny Bowden and Stephen Sinatra. Whatever diet you choose it is worth checking what it will do to you against the research they provide.
Regards,
What strikes me as common about the variety of "successful" diets is they are all low in refined sugar. A Wahls diet is diametrically opposite to a Jelinik/(Swank) diet in terms of animal fats yet both proclaim some success. What they have in common is natural foods and very little sugar. Jelinik needs vitamin D supplements because he is effectively running a low cholesterol diet and you need cholesterol to make vitamin D.
As hormones control almost every metabolic event the things that influence them become critical. Food choices are the obvious starting point. Barry Sears who was the nutritional advisor to several US Olympic teams focused on this in his zone diets.
Insulin is the only hormone that prevents our blood sugar from rising too high whilst glucagon-cortisol,adrenaline, noradrenaline and human growth hormone prevent it from falling too low. It shows how powerful Insulin is that all those other hormones are needed to counterbalance it.
Insulin supplies sugar to muscles. When they have enough the balance goes to fat cells. Sugar is probably a more important swing factor than ingested fat. If you have too much sugar your insulin levels are stimulated. High insulin can narrow artery walls, raise blood pressure and signal kidneys to hold on to more salt.
The excess sugar goes goes to fat cells until they are exhausted by a sugar heavy (and high carb) diet. You start to find it difficult to lose weight and the fat cells start to release chemicals that contribute to inflammation. You swing towards insulin resistance and the beneficial effects of insulin disappear to be replaced by inflammatory consequences. You are pushed towards hypertension, diabetes and potentially obesity. All the diets that seem to have some degree of success are ketogenic. (ie The body burns fats rather than carbohydrates)
None of this problem with sugar is exclusive to us and is common in huge swags of populations influencing heart disease in particular. What we need to watch for is controlling inflammation. All these diets will help.
A good, readable book on this is "The great cholesterol myth" by Jonny Bowden and Stephen Sinatra. Whatever diet you choose it is worth checking what it will do to you against the research they provide.
Regards,
Re: Try plant based diet: new study
individuals must definitely understand their body's needs. yes, average joe should eat more fruit and veg. but vegetables can't save you from ms. 'plant-based' can be oversimplified to detrimental extremes.
example: i was vegan for well over a decade before i was diagnosed. b12 was mentioned above. i was b12 deficient as a vegan (tip of the iceberg). b12 deficiency syndrome is *the* main differential dx for ms. my spinal lesions follow classic b12 deficiency layout. i was diagnosed in part because of issues that didn't match b12 deficiency. in the ensuing years i slowly figured out everything else i was deficient in from the vegan era, and i worked hard to correct those problems.
i am definitely not vegan now, omni for sure. plant emphasis, yes. i have eaten spinach, red pepper, an entire tomato, and a large mushroom so far today and i haven't even made it to lunch yet. if this was a weekday i would have had a cup or so of mixed berries by now, and some oats. by the end of the day today i will have added broccoli, zucchini, carrot, cauliflower, sweet potato, regular potato, other mixed roasted root veg, and brown rice, some nuts and seeds, perhaps some beans, undoubtedly with more tomato and mushroom in the mix as well. animal products are in there too. egg, dairy and meat. just not a ton. oh and i took my fish oil.
when i was at my sickest, my naturopath at the time (one of an array of conventional and alternative specialists in the picture, and someone who also had ms) had advised me to avoid 'potential food allergens' including many things, like eggs, which i hadn't touched in years as a vegan. it didn't make sense. i found the klenner protocol which specifies 'high protein diet with 2-3 eggs for breakfast' among other things, which i adapted for my own purposes (mostly subbing in oral supplements instead of injections). it turned me around in a matter of days. during the long years in a low protein situation something had gone wrong. klenner's advice represented a change to my status quo that made sense. and it worked.
overall, where dietary approaches are concerned, we know which macro and micro nutrients are suspect in ms. how individuals interpret 'plant based' will affect how useful their day to day choices are related to these nutrients. kraft dinner and potato chips are plant-based, after all.
a decade's worth of related posts: http://www.thisisms.com/forum/jimmylegs ... ords=vegan
example: i was vegan for well over a decade before i was diagnosed. b12 was mentioned above. i was b12 deficient as a vegan (tip of the iceberg). b12 deficiency syndrome is *the* main differential dx for ms. my spinal lesions follow classic b12 deficiency layout. i was diagnosed in part because of issues that didn't match b12 deficiency. in the ensuing years i slowly figured out everything else i was deficient in from the vegan era, and i worked hard to correct those problems.
i am definitely not vegan now, omni for sure. plant emphasis, yes. i have eaten spinach, red pepper, an entire tomato, and a large mushroom so far today and i haven't even made it to lunch yet. if this was a weekday i would have had a cup or so of mixed berries by now, and some oats. by the end of the day today i will have added broccoli, zucchini, carrot, cauliflower, sweet potato, regular potato, other mixed roasted root veg, and brown rice, some nuts and seeds, perhaps some beans, undoubtedly with more tomato and mushroom in the mix as well. animal products are in there too. egg, dairy and meat. just not a ton. oh and i took my fish oil.
when i was at my sickest, my naturopath at the time (one of an array of conventional and alternative specialists in the picture, and someone who also had ms) had advised me to avoid 'potential food allergens' including many things, like eggs, which i hadn't touched in years as a vegan. it didn't make sense. i found the klenner protocol which specifies 'high protein diet with 2-3 eggs for breakfast' among other things, which i adapted for my own purposes (mostly subbing in oral supplements instead of injections). it turned me around in a matter of days. during the long years in a low protein situation something had gone wrong. klenner's advice represented a change to my status quo that made sense. and it worked.
overall, where dietary approaches are concerned, we know which macro and micro nutrients are suspect in ms. how individuals interpret 'plant based' will affect how useful their day to day choices are related to these nutrients. kraft dinner and potato chips are plant-based, after all.
a decade's worth of related posts: http://www.thisisms.com/forum/jimmylegs ... ords=vegan
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Re: Try plant based diet: new study
Jimmylegs, I am very interested in the story of how you were diagnosed. I don't have diagnosis but have been through some testing due to paresthesia, rib/chest pain, gait issues and vision disturbances. I have been vegetarian most of my life and went vegan 6 years ago. I knew that I needed to supplement B12 but I admit that I wasn't consistent with it. When I was tested 4 months ago my B12 was 233 and D was 7. I was able to bring both up. B12 is now at 790 and D is 50 but I am much much worse now than I was before I started supplementing and getting injections. Neurologist ordered thorough blood work and all other levels were normal range. Also no Lyme, no autoimmune, normal EMG. Had a brain MRI but not spinal. I have read that some people recover from vitamin deficiency neurological symptoms and sometimes they are permanent . But why would mine be getting worse after raising the levels? Going for a second opinion with a neurologist (first one admitted he didn't know much about vitamin deficiency issues) but won't be seen until November. Can you share a bit more about how your doctors handled your vitamin deficiency? Also, you mentioned your spinal lesions were classic for B12. How do they present different from ms lesions? Any insight is appreciated because I can't seem to find much on this. Thank you.
Re: Try plant based diet: new study
hi dm sure no problem
when i was diagnosed, i had been used to getting away with playing with fire b12-wise, without really having any clue that i was butchering my spinal cord in the process. i would feel my feet go numb, and get weak, but i wouldn't bother with b12 until my knees started to give out or something like that. idiotic. i would take some b12 and it would all go away.
then one day, it didn't all go away. i didn't know it then, but by this time i had lots of insufficiencies and outright deficiencies, not just b12. then i crashed on a snowboard (without a helmet, such a genius) and within days i was in the mri machine and inside a week i officially had ms.
as for feeling worse since supplementing. it makes sense i am afraid. you could be out of balance in an array of ways that are consistent with vegetarianism/veganism and ms. if the docs identify one single thing and treat just that one thing without looking at interactions, they can make a bad situation worse. did they tell you to take anything else along with d3 as cofactors etc? did they just have you on b12 injections, or did they point you at the whole b complex? what tests did they run that came back 'normal'?
i started out as one of those people for whom it was reversible, and then i took it too far and became part of the less fortunate group. with intense therapeutic nutrition i got a lot better fast then plateaued. i kept up the long term lifestyle changes, and am pretty happy with the results. i look pretty normal to others, but i have sensory issues and physical limitations i didn't have before. still no meds.
the docs didnt really handle my issues, i did all the research and brought it to my docs to justify my requests for tests. i found deficiencies my doc never would have, and made connections she never would have either. it is all really fascinating.
b12 and ms spinal lesions are not really different. that's why b12 deficiency is a differential dx for ms. if the doc sees oh, look lesions on the spinal cord, and they think maybe ms, they will tend to look for other signs as well that are less of a red flag for b12 and more consistent with ms patients. they should also test for b12 esp in vegans, so it's good they did. in the future, they will figure out how to run and interpret all the other tests they should also do, but for now we have to take care of that a bit more independently. which is okay just a bit more work.
so 233 and 790.. may i ask are you in the states? just trying to get a sense of the units you're talking. same with the d3 - 50 can mean two very different things depending on the units!
re link below, not a very readable site but it gives GREAT detailed info on b12 deficiency. first time on this site i would have been looking up half the words on wikipedia lol http://neuromuscular.wustl.edu/nother/vitamin.htm#B12
pretty sure this site is for med students. scroll down to the 'pathology' bullet and then under localization it says where b12 lesions will occur: cervical and thoracic
if you actually browse through some of my older 'vegan' posts those would probably hook you into plenty of nitty gritty details. can't guarantee there isnt anything stupid in there though lol it did all start 10 yrs ago.
always happy to chat about food if you are interested. i learned a lot about the intersections between nutrients low in vegan diets and in typical ms patients. it's all so interesting
when i was diagnosed, i had been used to getting away with playing with fire b12-wise, without really having any clue that i was butchering my spinal cord in the process. i would feel my feet go numb, and get weak, but i wouldn't bother with b12 until my knees started to give out or something like that. idiotic. i would take some b12 and it would all go away.
then one day, it didn't all go away. i didn't know it then, but by this time i had lots of insufficiencies and outright deficiencies, not just b12. then i crashed on a snowboard (without a helmet, such a genius) and within days i was in the mri machine and inside a week i officially had ms.
as for feeling worse since supplementing. it makes sense i am afraid. you could be out of balance in an array of ways that are consistent with vegetarianism/veganism and ms. if the docs identify one single thing and treat just that one thing without looking at interactions, they can make a bad situation worse. did they tell you to take anything else along with d3 as cofactors etc? did they just have you on b12 injections, or did they point you at the whole b complex? what tests did they run that came back 'normal'?
i started out as one of those people for whom it was reversible, and then i took it too far and became part of the less fortunate group. with intense therapeutic nutrition i got a lot better fast then plateaued. i kept up the long term lifestyle changes, and am pretty happy with the results. i look pretty normal to others, but i have sensory issues and physical limitations i didn't have before. still no meds.
the docs didnt really handle my issues, i did all the research and brought it to my docs to justify my requests for tests. i found deficiencies my doc never would have, and made connections she never would have either. it is all really fascinating.
b12 and ms spinal lesions are not really different. that's why b12 deficiency is a differential dx for ms. if the doc sees oh, look lesions on the spinal cord, and they think maybe ms, they will tend to look for other signs as well that are less of a red flag for b12 and more consistent with ms patients. they should also test for b12 esp in vegans, so it's good they did. in the future, they will figure out how to run and interpret all the other tests they should also do, but for now we have to take care of that a bit more independently. which is okay just a bit more work.
so 233 and 790.. may i ask are you in the states? just trying to get a sense of the units you're talking. same with the d3 - 50 can mean two very different things depending on the units!
re link below, not a very readable site but it gives GREAT detailed info on b12 deficiency. first time on this site i would have been looking up half the words on wikipedia lol http://neuromuscular.wustl.edu/nother/vitamin.htm#B12
pretty sure this site is for med students. scroll down to the 'pathology' bullet and then under localization it says where b12 lesions will occur: cervical and thoracic
if you actually browse through some of my older 'vegan' posts those would probably hook you into plenty of nitty gritty details. can't guarantee there isnt anything stupid in there though lol it did all start 10 yrs ago.
always happy to chat about food if you are interested. i learned a lot about the intersections between nutrients low in vegan diets and in typical ms patients. it's all so interesting
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Re: Try plant based diet: new study
It may also be helpful to compare some MRIs of B12 deficiency induced spinal demyelination vs. MS. When caused by B12 deficiency, this demyelination is known as subacute combined degeneration. It tends to occur in long patches of the spinal cord whereas MS demyelination in the same area tends to be more punctate.DancerMom wrote:Also, you mentioned your spinal lesions were classic for B12. How do they present different from ms lesions? Any insight is appreciated because I can't seem to find much on this.
http://radiopaedia.org/articles/subacut ... the-cord-1
View the images in the right hand columns and then compare that to the MS image at the bottom.
You can also view the following video which presents histopathology of the spinal cord in B12 deficiency.
The demyelination in subacute combined degeneration can occur in the lateral and ventral tracts in addition to the posterior columns.
Re: Try plant based diet: new study
Something else to consider about a 'modern day' plant based diet.
Today's fruit are basically sugar water. Today's vegetables have little nutrition in them due to farming practices. Both, whether farmed conventionally or organically, have a fair amount of pesticides on/in them. And when it comes to vegetables, the dark green, leafy variety like kale, spinach, etc. are considered the most nutritious, and also have the highest pesticide content.
So a plant based diet, IMHO is not a modern day option for these reasons alone.
Today's fruit are basically sugar water. Today's vegetables have little nutrition in them due to farming practices. Both, whether farmed conventionally or organically, have a fair amount of pesticides on/in them. And when it comes to vegetables, the dark green, leafy variety like kale, spinach, etc. are considered the most nutritious, and also have the highest pesticide content.
So a plant based diet, IMHO is not a modern day option for these reasons alone.
Re: Try plant based diet: new study
Thank you for the information! After posting last night I did go back and read through old posts and the other links that were given. I wish I was better at reading the medical jargon but I'm trying to make sense of it all. I will check out more as the day goes on. Yes, I am in the states so the B12 was at 233pg/ml with a reference range of 180-914. So I was on the low end of normal but I understand that still may not have been enough for my needs. The normal D level for the 25 Hydroxy test is 30-100 so my level of 7 was quite low. I did B12 injections 1x week and then went to 1x month. For the D I took an oral gel capsule of 50,000 units for 12 weeks. Both b12 and d were tested last month and my GP thought the levels were good. I will keep doing the b12 injections and he said to take an oral supplement of 2000iu of D3 daily. None of the doctors that I have seen have told me to supplement with anything else but I did start taking a daily vitamin. Just one of those vitamins with the basics. Honestly, I never noticed feeling any better while my levels were rising. Some people say they felt better but I never did. As for my other blood tests, here is a list:
Iron and TIBC (FE panel)
Glychohemoglobin
CBC with differential
B6
Immunoel Prof 11
FSH
TSF
Celiac
Analyzer TM Profile
Hep C
Anti CCP
Complete Metabolic panel
Also my EMG and NVT were normal
I can give you specific levels if there is anything that might be important. Does my B12 level of 233 seem like it could be low enough to be causing my neurological symptoms? Maybe in combination with the low d? I am looking forward to seeing a new neurologist in November but until then, I am worried because my symptoms are getting progressively worse. I appreciate any advise and thoughts as I feel quite lost in all of this!
Iron and TIBC (FE panel)
Glychohemoglobin
CBC with differential
B6
Immunoel Prof 11
FSH
TSF
Celiac
Analyzer TM Profile
Hep C
Anti CCP
Complete Metabolic panel
Also my EMG and NVT were normal
I can give you specific levels if there is anything that might be important. Does my B12 level of 233 seem like it could be low enough to be causing my neurological symptoms? Maybe in combination with the low d? I am looking forward to seeing a new neurologist in November but until then, I am worried because my symptoms are getting progressively worse. I appreciate any advise and thoughts as I feel quite lost in all of this!
Re: Try plant based diet: new study
Have you had any of the other B12 related tests, i.e., red blood cell (RBC) folate, homocysteine and methylmalonic acid (MMA)?DancerMom wrote:Does my B12 level of 233 seem like it could be low enough to be causing my neurological symptoms?
In my own experience, just over two years ago my B12 tested at 247 pg/mL. Many might consider that low, but OK. However, my homocysteine was elevated at 16 µmol/L (range 4-12 µmol/L) and RBC folate was deficient at 403 ng/mL (range 500-1500 ng/mL). Taken together, I had a folate deficiency which over a period of time induced a B12 deficiency (methylfolate recycles spent B12 back to the active methylated form). So, in my case with the neurological symptoms I had, B12 at 247 pg/mL represented a deficiency. As such, to evaluate B12 status, you need to look at the full set of tests combined with your symptoms.
Re: Try plant based diet: new study
you're welcome! yep it's quite a learning curve. that's what i like most about having a crappy dx. made me learn a LOT.
with pg/ml for b12 and that 30-100 range for 25(OH)d3 looks like units for that are ng/mL. 50 ng/mL is solid, but it wouldn't be if you were speaking nmol/L, hence the question
can i assume that 50K d3 was once a week? 2000 d3 daily will be okay but you will want to add some other things for it to work with. a really great pharmacist told me i had to take more magnesium with my d3. i said i was already taking that and he said it's not enough, and you're not timing it right. he said take half of you mag at the same time as d3, and half on its own separately. i was really suffering at the time and in a couple days things were really turning around. it was amazing.
i took d3 for a while before getting a test but when i finally did it, my level was 28 ng/ml. i got it up to 50 by megadosing and then 4000IU per day. there were studies suggesting this was a safe dose but no studies exceed 6 mo duration and they didn't look at any cofactors besides calcium (because hypercalcemia is the main thing on the radar as an undesirable side effect of d3 excess). this gap in the science still exists. anyway i did my d3 thing for ages with a low dose multimineral in the picture but it ended up not being enough. i never felt any different taking d3. i just felt better knowing it was in a more optimal part of the range. eventually i learned i didn't even need d3 megadoses at all if my mineral cofactors were in good shape.
thanks for sending the list of tests. how did iron and TIBC come out? i'm assuming b6 was not high? did the metabolic panel include all of these components? https://labtestsonline.org/understandin ... /tab/test/
is there hemoglobin in there anywhere? klenner suggests Hg 13g minimum.
good to hear your EMG and NVT were normal.
with b12, for ages i have been going with a old recommendation in the literature suggesting min 500 pg/ml for serum b12. it was published in an academic journal, not what you'd call high quality science or anything, but it was a starting point. i aim for 500 in pmol/ml which is going above and beyond (about 680 in pg/ml), but i'm ok with that. i do think it's possible for your 233 level to be associated with problems. it can vary day to day. when i was vegan i didn't approach blood tests properly and i would take b12 before they tested, always coming back with levels in the low 200s. when things started to go wrong, i ran a clean test out of curiosity, and they could not detect any b12 in my system. good for you to be at 790 now.
re b12 vs ms lesions, i'll have to go back and look at the transverse images on my mri disk, will be interesting to check out. my neuro certainly didn't (or if he did, he didn't clarify for me). he didn't like me asking questions. and asked me if i was a fan of grey's anatomy. um, what? lol
i had mma and hcy tested in 2006 but before i even got the results, i had read enough to know that for me at least, those would not turn out to be a problem, and they weren't.
adding a daily vitamins was a good call. it will help top up where food falls short in a status quo situation for a healthy individual. what it will not do though, is help top up deficits associated with illness
between now and november, one thing you can do on your own is start tracking your food and fluids, meds and supplements. just start keeping a diary and after a week or two you can go back and look at how you compare to recommended daily amounts for nutrients that are suspect in ms. besides b12 and iron, one big one to look into as a vegan is zinc. i was deficient first time i asked for that test, not just low normal. personally, zinc was one i really could feel take effect when i fixed it.
i'm going to circle back to the klenner protocol, because you mention taking b12 only and not feeling better. i mentioned before i eventually took b12 without experiencing the same recovery, and that then i did klenner and did feel much better. tracking your own intakes would be a good start but if you feel more ambitious, you could see if any elements of the klenner protocol sound like they would make sense for you.
when i did my version of the klenner protocol, i bought all the components of the b complex individually so that i could get a custom amount of each through the day. if i had to do this protocol again now, i would probably simplify the whole B-vit element down to a couple of B50 complex caplets before each meal and bed time.
warning. this is a therapeutic thing to be done short term. for example, it says take 400mg total of b6 per day. long term, you don't want to get more than 100mg per day of B6. high b6 is trouble; i suspect it's in your set of tests for good reason.
what i did klenner-wise looked like this:
dietary
-High protein diet with two to three eggs for breakfast
-Protocol suggests lecithin, instead of pills i bought granules and worked them into meals. i remember sprinkling them on fruit in the morning for example. it wasnt a lasting habit but they were ok.
before all three meals and bed
-vit B1 (thiamine) 300mg
-vit B2 (riboflavin) 25mg
-vit B3 (niacin) 100mg *
-vit B5 (pantothenic acid) 200mg
-vit B6 (pyridoxine) 100mg
-vit B9 **
-vit C 2000mg
-vit D ***
-vit E 800 IU ****
once a day, midday
-vit B12 (cobalamin) 1000mcg (sublingual strip)
* i did niacinamide sometimes, straight niacin other times.
klenner comments re niacin "The lack of constant flushing in Multiple Sclerosis is disappointing but not hopeless" note that this protocol omits beneficial fatty acids like omega 3s. later research determined that failure to elicit a flush reaction from a niacin dose can be due to polyunsaturated fatty acid (PUFA) deficit. i get a solid flush reaction from niacin, so it makes me feel good about my fatty acid status at least
** this protocol omits B9 (folic acid). i havent looked into the folate side of the issue much. the only problem i have ever had with it is excess.
*** this protocol omits vit d3. it was developed before quite as much had been published about d3.
**** protocol being old, it recommends a form of vit E that i wouldn't personally use now - find E8complex with 8 mixed natural ratio tocopherols (4) and tocotrienols(4). not knowing better, i used regular vit E at the time and was fine. i just wouldn't recommend it for long term use.
for the rest of it, the details were over my head 10 yrs ago and i just added a multimineral. now i would take more care. for example:
item 12 in the protocol is magnesium and 15 is glycine. at this point i would just say 100mg per day magnesium glycinate. (which didn't exist as an option when the protocol was written).
the zinc is important too. 10mg zinc citrate would be a good start. you want 2% copper in any zinc supplement. it's not a good idea to supplement zinc alone if iron is also low, and vice versa. important for vegans in particular.
final note, this is therapeutic first aid style supplementing. not to be done long term. i felt it kick in on the third day. after that i was able to dial things back a bit.
well that is that! i should be writing other stuff, better get at it ciao for now
with pg/ml for b12 and that 30-100 range for 25(OH)d3 looks like units for that are ng/mL. 50 ng/mL is solid, but it wouldn't be if you were speaking nmol/L, hence the question
can i assume that 50K d3 was once a week? 2000 d3 daily will be okay but you will want to add some other things for it to work with. a really great pharmacist told me i had to take more magnesium with my d3. i said i was already taking that and he said it's not enough, and you're not timing it right. he said take half of you mag at the same time as d3, and half on its own separately. i was really suffering at the time and in a couple days things were really turning around. it was amazing. i took d3 for a while before getting a test but when i finally did it, my level was 28 ng/ml. i got it up to 50 by megadosing and then 4000IU per day. there were studies suggesting this was a safe dose but no studies exceed 6 mo duration and they didn't look at any cofactors besides calcium (because hypercalcemia is the main thing on the radar as an undesirable side effect of d3 excess). this gap in the science still exists. anyway i did my d3 thing for ages with a low dose multimineral in the picture but it ended up not being enough. i never felt any different taking d3. i just felt better knowing it was in a more optimal part of the range. eventually i learned i didn't even need d3 megadoses at all if my mineral cofactors were in good shape.
thanks for sending the list of tests. how did iron and TIBC come out? i'm assuming b6 was not high? did the metabolic panel include all of these components? https://labtestsonline.org/understandin ... /tab/test/
is there hemoglobin in there anywhere? klenner suggests Hg 13g minimum.
good to hear your EMG and NVT were normal.
with b12, for ages i have been going with a old recommendation in the literature suggesting min 500 pg/ml for serum b12. it was published in an academic journal, not what you'd call high quality science or anything, but it was a starting point. i aim for 500 in pmol/ml which is going above and beyond (about 680 in pg/ml), but i'm ok with that. i do think it's possible for your 233 level to be associated with problems. it can vary day to day. when i was vegan i didn't approach blood tests properly and i would take b12 before they tested, always coming back with levels in the low 200s. when things started to go wrong, i ran a clean test out of curiosity, and they could not detect any b12 in my system. good for you to be at 790 now.
re b12 vs ms lesions, i'll have to go back and look at the transverse images on my mri disk, will be interesting to check out. my neuro certainly didn't (or if he did, he didn't clarify for me). he didn't like me asking questions. and asked me if i was a fan of grey's anatomy. um, what? lol
i had mma and hcy tested in 2006 but before i even got the results, i had read enough to know that for me at least, those would not turn out to be a problem, and they weren't.
adding a daily vitamins was a good call. it will help top up where food falls short in a status quo situation for a healthy individual. what it will not do though, is help top up deficits associated with illness
between now and november, one thing you can do on your own is start tracking your food and fluids, meds and supplements. just start keeping a diary and after a week or two you can go back and look at how you compare to recommended daily amounts for nutrients that are suspect in ms. besides b12 and iron, one big one to look into as a vegan is zinc. i was deficient first time i asked for that test, not just low normal. personally, zinc was one i really could feel take effect when i fixed it.
i'm going to circle back to the klenner protocol, because you mention taking b12 only and not feeling better. i mentioned before i eventually took b12 without experiencing the same recovery, and that then i did klenner and did feel much better. tracking your own intakes would be a good start but if you feel more ambitious, you could see if any elements of the klenner protocol sound like they would make sense for you.
when i did my version of the klenner protocol, i bought all the components of the b complex individually so that i could get a custom amount of each through the day. if i had to do this protocol again now, i would probably simplify the whole B-vit element down to a couple of B50 complex caplets before each meal and bed time.
warning. this is a therapeutic thing to be done short term. for example, it says take 400mg total of b6 per day. long term, you don't want to get more than 100mg per day of B6. high b6 is trouble; i suspect it's in your set of tests for good reason.
what i did klenner-wise looked like this:
dietary
-High protein diet with two to three eggs for breakfast
-Protocol suggests lecithin, instead of pills i bought granules and worked them into meals. i remember sprinkling them on fruit in the morning for example. it wasnt a lasting habit but they were ok.
before all three meals and bed
-vit B1 (thiamine) 300mg
-vit B2 (riboflavin) 25mg
-vit B3 (niacin) 100mg *
-vit B5 (pantothenic acid) 200mg
-vit B6 (pyridoxine) 100mg
-vit B9 **
-vit C 2000mg
-vit D ***
-vit E 800 IU ****
once a day, midday
-vit B12 (cobalamin) 1000mcg (sublingual strip)
* i did niacinamide sometimes, straight niacin other times.
klenner comments re niacin "The lack of constant flushing in Multiple Sclerosis is disappointing but not hopeless" note that this protocol omits beneficial fatty acids like omega 3s. later research determined that failure to elicit a flush reaction from a niacin dose can be due to polyunsaturated fatty acid (PUFA) deficit. i get a solid flush reaction from niacin, so it makes me feel good about my fatty acid status at least
** this protocol omits B9 (folic acid). i havent looked into the folate side of the issue much. the only problem i have ever had with it is excess.
*** this protocol omits vit d3. it was developed before quite as much had been published about d3.
**** protocol being old, it recommends a form of vit E that i wouldn't personally use now - find E8complex with 8 mixed natural ratio tocopherols (4) and tocotrienols(4). not knowing better, i used regular vit E at the time and was fine. i just wouldn't recommend it for long term use.
for the rest of it, the details were over my head 10 yrs ago and i just added a multimineral. now i would take more care. for example:
item 12 in the protocol is magnesium and 15 is glycine. at this point i would just say 100mg per day magnesium glycinate. (which didn't exist as an option when the protocol was written).
the zinc is important too. 10mg zinc citrate would be a good start. you want 2% copper in any zinc supplement. it's not a good idea to supplement zinc alone if iron is also low, and vice versa. important for vegans in particular.
final note, this is therapeutic first aid style supplementing. not to be done long term. i felt it kick in on the third day. after that i was able to dial things back a bit.
well that is that! i should be writing other stuff, better get at it ciao for now
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Re: Try plant based diet: new study
Whew. Wish I had gone to med school! To NHE, I didn't find folate, homocysteine or mma on my blood work, unless they are under a different name? My RBC was a little low but neurologist said it wasn't low enough to worry about. It was 3.89 with reference range of 4.20-5.40. Do I need to do something about that?
Jimmy, yes the vitamin D was once a week for 12 weeks at 50k units. I will look into the magnesium and appreciate the suggestion of taking it at different times. The Iron and TIBC were all normal except the "usat iron binding capacity"was high at 316ug/dl with a normal range of 140-280 ug/dl. The neuro didn't mention that though. I assume it's because everything else on that test was in normal range. B6 was not high. All of the things listed on the metabolic panel were tested and normal. I will definitely start tracking food and fluid intake and will consider the klenner protocol. I appreciate all the info. I really hope the new neurologist will know more about this than the one I saw. I didn't want to necessarily see an ms specialist because all of this may be from the vitamin deficiencies but I was told that an ms specialist would be able to diagnose and treat ms mimicries as well.
Thanks for the help. It's great to have a people to talk to about this.
Jimmy, yes the vitamin D was once a week for 12 weeks at 50k units. I will look into the magnesium and appreciate the suggestion of taking it at different times. The Iron and TIBC were all normal except the "usat iron binding capacity"was high at 316ug/dl with a normal range of 140-280 ug/dl. The neuro didn't mention that though. I assume it's because everything else on that test was in normal range. B6 was not high. All of the things listed on the metabolic panel were tested and normal. I will definitely start tracking food and fluid intake and will consider the klenner protocol. I appreciate all the info. I really hope the new neurologist will know more about this than the one I saw. I didn't want to necessarily see an ms specialist because all of this may be from the vitamin deficiencies but I was told that an ms specialist would be able to diagnose and treat ms mimicries as well.
Thanks for the help. It's great to have a people to talk to about this.
Re: Try plant based diet: new study
hehe that was a bit of an essay huh :S
no prob re magnesium timing info. if you go with a supplement, choose one like magnesium glycinate, over magnesium oxide.
the food aspect is important, but digging into that info can wait until you've journaled for a while. early days, i definitely used supplements as a short term first aid kind of strategy, and took more time figuring out the dietary details.
high uibc is associated with iron deficiency here https://labtestsonline.org/understandin ... /tab/test/
makes sense being a vegan. you probably know all the strategies to max iron absorption from veg?
can i clarify was it iron that they ran, or was there a serum ferritin result in there anywhere? if they're receptive, perhaps you could order serum magnesium and serum zinc. they'd come back 'normal' most likely, maybe borderline or deficient for the zinc as a vegan, but you can be 'healthy optimal', or 'typical ms patient' - both smaller ranges exist within the broader general 'normal' range.
not to bum you out, but even my naturopath with ms was not the most informed nutritional advisor. medical pros tend to brush things off when they're outside their own specialty. case in point my ms clinic was very dismissive when i took my nutrition plan to them for review. and when my magnesium issues were worst, i was referred to a throat specialist. by the time i had my appointment, i had already made the magnesium connection thanks to the awesome pharmacist, but the throat guy didn't want to know. he just said i didnt really need to clear my throat and sent me home with the 'behaviour modification protocol' he'd developed. complete waste of time! all that said, i will say what i've said before - docs can be great, i love that i could get my knee reconstructed so neatly when i needed it, love the physiotherapists that sorted out my skeleton and ended YEARS of chronic pain, and all the support i have enjoyed from various docs while working to get tests done and questions answered. but there are limits to everybody's time and energy. somebody's side burner nutrition info isn't necessarily going to be your best bet.
just chipping in briefly re rbc folate. when i took it without enough cofactors, i used to get an allergic reaction and my levels would skyrocket. once i fixed some other deficiency/insufficiency problems, i could handle folate properly.
good to hear you're cool to do some food/fluid journaling. should help clarify if a klenner style approach will make any sense for you personally.
glad we can be here for you dm
no prob re magnesium timing info. if you go with a supplement, choose one like magnesium glycinate, over magnesium oxide.
the food aspect is important, but digging into that info can wait until you've journaled for a while. early days, i definitely used supplements as a short term first aid kind of strategy, and took more time figuring out the dietary details.
high uibc is associated with iron deficiency here https://labtestsonline.org/understandin ... /tab/test/
makes sense being a vegan. you probably know all the strategies to max iron absorption from veg?
can i clarify was it iron that they ran, or was there a serum ferritin result in there anywhere? if they're receptive, perhaps you could order serum magnesium and serum zinc. they'd come back 'normal' most likely, maybe borderline or deficient for the zinc as a vegan, but you can be 'healthy optimal', or 'typical ms patient' - both smaller ranges exist within the broader general 'normal' range.
not to bum you out, but even my naturopath with ms was not the most informed nutritional advisor. medical pros tend to brush things off when they're outside their own specialty. case in point my ms clinic was very dismissive when i took my nutrition plan to them for review. and when my magnesium issues were worst, i was referred to a throat specialist. by the time i had my appointment, i had already made the magnesium connection thanks to the awesome pharmacist, but the throat guy didn't want to know. he just said i didnt really need to clear my throat and sent me home with the 'behaviour modification protocol' he'd developed. complete waste of time! all that said, i will say what i've said before - docs can be great, i love that i could get my knee reconstructed so neatly when i needed it, love the physiotherapists that sorted out my skeleton and ended YEARS of chronic pain, and all the support i have enjoyed from various docs while working to get tests done and questions answered. but there are limits to everybody's time and energy. somebody's side burner nutrition info isn't necessarily going to be your best bet.
just chipping in briefly re rbc folate. when i took it without enough cofactors, i used to get an allergic reaction and my levels would skyrocket. once i fixed some other deficiency/insufficiency problems, i could handle folate properly.
good to hear you're cool to do some food/fluid journaling. should help clarify if a klenner style approach will make any sense for you personally.
glad we can be here for you dm
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Re: Try plant based diet: new study
It's unlikely the tests are under different names. Here's some background information on the additional tests. Homocysteine and methylmalonic acid (MMA) are two biomarkers that indicate how well your body is utilizing the B12 you do have. Both can be elevated if B12 is low or isn't being utilized well. Homocysteine is a cardiotoxic aminoacid. It can be elevated in the case of low folate or low vitamin B6 in addition to low B12. MMA, however, is thought to be more specific to low B12 as it can also be elevated in cases of low B12. However, false negative test results can occur in cases where antibiotics were used around the time of the MMA test.DancerMom wrote:Whew. Wish I had gone to med school! To NHE, I didn't find folate, homocysteine or mma on my blood work, unless they are under a different name?
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