My ms regimen, thoughts?

Tell us what you are using to treat your MS-- and how you are doing.

My ms regimen, thoughts?

Postby tmckenna » Tue Apr 24, 2012 9:04 pm

Hello all, this is my first post, I'm a 30yr old male, I live in new zealand and I got diagnosed with ms exactly a year ago, it was terrifying in the beginning, but I have learnt so much about myself and my illness in the process, and now I just try to do the best I can with what I have.
I was going to go onto copaxone in the beginning but could not afford it , and there is no co pay here where I live.

Anyway, early on I started looking into diet and the Wahls protocal caught my attention, I slowly started transitioning to this way of eating, I increased my intake of vegetables, started eating grass fed meat, cut out gluten and dairy, I was a healthy eater before this anyway and gave up processed food a few years ago.
I also started taking LDN a few months ago, 4.5 mg in the morning as it was giving me sleeping difficulties when taking it at night, I did notice some improvements so I will continue taking it.

So my daily regimen is:
4.5 mg ldn
Breakfast is usually berry, beet, carrot, spirulina and kale/leafy green smoothie, ground brown rice porridge with manuka honey for sweetener and coconut oil for taste.
Lunch is usually leftovers, or sandwiches with vegetable smoothie.
Dinner as per Wahls diet, but I do have rice as no starch paleo is very difficult for someone as physically active as me.
I never cheat and I'm not sure if a good thing or a bad thing, I don't want to risk getting sicker as following these guidelines has helped me greatly.
B complex 100
R, s Alpha lipoic acid150 mg
Co enzyme q (ubiquinol)100 mg
Fish oil 2000 mg, sometimes I have another 2000 in the evening.
Vit d3 4000 iu, sometimes the same amount in the evening.
Magnesium malate, one two three tablets a day
Tumeric, I just make my own in capsules, I realize its not the most bioavailable form but its cheap.
Probiotic
Kelp
B 12, 500-1000 sublingual drops.
Hemp oil

That is all I can think of right now so I could have missed something out, there are a few supplements like l carnitine that I would like to take but am on a budget.
I would like to hear what you guys think about my regimen, are any of these unnecessary? or could I do with adding something else?



NAC, 250 mg twice a day

Just from browsing this forum I have become very interested in antibiotics, I will be taking the information to my doctor the next time I go to see her, so many people seem to be getting benefits from this treatment.
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Re: My ms regimen, thoughts?

Postby jimmylegs » Thu Apr 26, 2012 11:11 am

hey there, welcome to tims, sry you have to deal with nz, my friend lives there - health care is pricey hey :(

i don't see any zinc or selenium in your regimen, and ms patients have been shown to be low in both. they are both great infection fighters too, both antibacterial and antiviral.

i am having trouble finding studies on micronutrients associated with ubiquinone-10 status. think i found some info some time back though so i will try to find it again.

other than that i think your regimen looks good although i don't personally bother with a wahls diet or supplements like ala, coq10, turmeric, kelp, or hemp oil.

(although i do definitely think a healthy whole foods diet, with sufficient intakes of healthy fats proteins and complex carbs, one that is on balance anti-inflammatory, is fundamentally important).
READ ME key info on nutrient targets - www.thisisms.com/ftopict-2489.html
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
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Re: My ms regimen, thoughts?

Postby tmckenna » Sat Apr 28, 2012 10:25 pm

Thanks for the reply jimmy, I thought that I got enough zinc and selenium from food sources like brazil nuts and pumpkin seeds, I have zinc drops that contain 5 mg zinc sulphate in five drops how much should someone with ms take?
Here is a excerpt taken from the Wahls diet book (and the references to studies are in the back of the book, I can give you the details if you want)
Co enzyme q is an important ingredient in the mitochondrial process to generate ATP and is a potent intracellular antioxidant.It has been used successfully to reduce the severity of migraines, neuropathies, and dementia.
Alpha lipoic acid
Several studies suggest that the garment with alpha-lipoic acid may help reduce pain, burning, itching, tingling, and numbness in people who have nerve damage (peripheral neuropathy).
Tumeric
The indian curry spice curcumin has been found to increase expression of the enzymes that are important to the manufacturing of GABA (glutathione S-transferase), leading to the protection of neurons exposed to oxidant stress.
Kelp is a good source of iodine which is important to brain health because it is involved in making myelin.It is also important to the mitochondrial processes involved in removing toxic heavy metals.

What do you think? because the supplements are expensive and if they are not necessary I would love a second opinion.



and what does a anti inflammatory diet consist of?
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Re: My ms regimen, thoughts?

Postby jimmylegs » Sun Apr 29, 2012 7:13 am

hi there, no problem. you know, i told one of my co-workers to eat a couple brazil nuts for selenium, but i have read that the content is just not consistent, and here she is dealing with a lingering cold. she takes zinc too, but i'm not certain how much. i think her bloodwork would tell the tale if she had some done. i'm also not so sure about the bioavailability of zinc from pumpkin seeds. i have not yet found the study that looks at serum levels before and after dietary pumpkin seeds.

as for how much to take, it really depends on your serum levels. with zinc, you want to aim for the very top end of the normal range. for me, if i back off 50mg of zinc a day, i'll start to feel the consequences. i did 50mg every other day for a while and my levels went down to 14 and i was fighting off colds. so i'm back up to 50 per day. that is balanced with 2mg copper - important. on the other hand, i don't avoid gluten and that places a higher zinc demand on your system. (i used to really react horribly to bread but then i tested zinc, was outright deficient, fixed it, and now i can enjoy bread. within reason. it's not like i eat sandwiches every day or anything). anyway point being, if you avoid gluten etc. then you probably wouldn't need to take as much zinc.
as for selenium, 200mcg per day.

as for kelp, i personally get iodine from eggs, cheese and iodized salt. more on dietary choices below.

regarding turmeric, i think zinc is likely more fundamentally important to GABA manufacture, and it has a hundred other things to do in your body as well, which i'm not sure you can say about curcumin!

as for ala and coq10, i don't buy into supplementing things you're supposed to synthesize. if some body process is underproducing, i go looking for nutrients to support that process, preferring that to leaving it broken and providing essentially a crutch. to me it's like rewarding bad behaviour.

it's very hard to find studies that say directly that you need zinc for ala production, but this is the closest i can get

"alpha-Lipoic acid and N-acetyl cysteine prevent zinc deficiency-induced activation of NF-kappaB and AP-1 transcription factors in human neuroblastoma"
http://www.ncbi.nlm.nih.gov/pubmed/16298762

so, we screwed it up by taking the zinc away, and we fixed two things by adding ala and nac. myself i would just put the zinc back so it can do those two things plus a few hundred others for good measure."

also:
Oral zinc therapy in diabetic neuropathy.
http://www.ncbi.nlm.nih.gov/pubmed/11229219

and as for coq10, i still haven't gone digging for whatever i found previously, as mentioned above.

i don't avoid the potential allergen foods per the various diets. the reason for that is that i got diagnosed after not eating any meat, not a single egg (well there was that one deviled egg in 97) or any cheese for 15 years, so i wasn't buying it. instead i looked at what is the point of avoiding these foods - it's to discourage inappropriate inflammation. so then i went looking for what nutrients my diet had been missing (like zinc), and were they anti-inflammatory (answer, yes). i also found the klenner protocol for ms, which recommended a high protein diet with 2 eggs (mmm mmm, iodine!) for breakfast. there were also moments like a chat with my naturopath who encouraged me to increase my servings of fish per week. i mentioned toxins and bioaccumulation, and she said the positives outweigh the negatives. so the various pros and cons gradually led me along to the whole balance and inflammation factor concept.

i'll link you up to some of my regimen posts from a while back when i was calculating out some of my meals. i'm not perfect, i don't exercise enough, going from vegan to not added quite a few pounds i didn't really need, but i am waaaaayyyy more healthy than i was 6 yrs ago. hope that was useful :)
READ ME key info on nutrient targets - www.thisisms.com/ftopict-2489.html
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
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Re: My ms regimen, thoughts?

Postby jimmylegs » Sun Apr 29, 2012 7:24 am

here you go - even a wahls mention in there

regimens-f22/topic2489-225.html#p155699

regimens-f22/topic2489-255.html#p170052

off to make my eggs :D
READ ME key info on nutrient targets - www.thisisms.com/ftopict-2489.html
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
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Re: My ms regimen, thoughts?

Postby tmckenna » Mon Apr 30, 2012 12:43 am

Hello jimmy, thanks for all this info about zinc the more I read the more it makes sense.
Ok so I am going to go to my doctor and try to find out what my levels are, it might be a problem of it is too expensive to get the tests done, I will know soon enough.
I think I will start taking the zinc anyway and see how that goes, its going into winter here ago I guess it won't hurt.
I avoid gluten at all costs, have done so for some time now, so its good to know that it was not in vain.I will also buy some selenium as soon as I can.That is a good point about ala and co enzyme I will finish what I have and then see if I notice any difference, I could be spending that money on other important things.
I have never heard of the Klenner protocal but I will look into it, I already eat fish at least once a week and the Wahls
diet is relatively high in protein too.
My problem its that eating the lean way I do is causing me to lose too much weight so I have started to increase my non gluten grain intake because I sure hope that it is why I'm losing weight and not something else.
Thanks once again for all the info :wink:
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Re: My ms regimen, thoughts?

Postby tmckenna » Mon Apr 30, 2012 12:48 am

Oh I forgot to mention was also a vegetarian for a few years and I think it did not do me any favours
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Re: My ms regimen, thoughts?

Postby jimmylegs » Mon Apr 30, 2012 5:11 am

i hear you re the veg thing! it has to be done with extreme care. i told my doc i had concerns but they only ever tested the only thing i knew about before all this - b12 - and i used to cheat the bloodwork because i was STUPID. i didn't even know what 'neurological damage' meant. i didn't know my hands and feet were numb because my spinal cord was falling apart. gah!

the klenner protocol is old. it has value, but predates most of the vit d3 and immune function science. and it recommends alpha tocopherol, not E8 complex. also i think it's more complicated than need be.

i just took the rough equivalent of a B100 complex 4 times a day, 800 IU vit E 4 times a day (back then i did not know about E8 complex), the 1000mcg b12 (sublingual, methylcobalamin), and the zinc and magnesium, but as for those two i think it doesn't call for enough zinc for everyone, but it's a lot better than nothing!, and the magnesium was not the latest greatest form that's now available. the good thing is that magnesium glycinate, which is a good one, would actually provide a little glycine which is also part of the protocol. i did the niacin flush thing, and the vit C, and the multivit and multimineral, and the eggs for breakfast. i skipped everything else. especially the crude liver. didn't arrange injections or anything. still helped a lot. i only had to do it for a few days, then felt lots better, and backed off on the amounts of everything.

http://www.townsendletter.com/Klenner/klenner4.htm

and re fat, i'm a fan of healthy, whole food fats, within reason. eat em up!
READ ME key info on nutrient targets - www.thisisms.com/ftopict-2489.html
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
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Re: My ms regimen, thoughts?

Postby tmckenna » Mon May 14, 2012 12:21 am

hello jimmy, what tests do i ask for to get my blodwork done?
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Re: My ms regimen, thoughts?

Postby jimmylegs » Mon May 14, 2012 4:56 am

for an ex- whole food vegetarian, i'd check your b12, vit d3, zinc, magnesium, and selenium. just get the serum tests done. they're the most comparable to research. for d3 ask for serum 25(OH)vitamind3.

question re weight loss. do you eat lots of nuts and seeds?
READ ME key info on nutrient targets - www.thisisms.com/ftopict-2489.html
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
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Re: My ms regimen, thoughts?

Postby Jimpsull » Sun Jun 02, 2013 10:09 am

My thoughts:

- too much vitamin D. At 8000 IU per day (+ the vit D in your fish oil) it will over-accumulate in your system

- Zinc stimulates pro-inflammatory cytokine release and T-cell proliferation and worsened EAE in mice.

- PUFAs (fish oil, evening primrose oil, safflower oil, etc) have the most research behind them. Creatine mono hydrate with Alpha-lipoic acid and inosine both also seem worthwhile with more positives than negatives associated with them.
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Re: My ms regimen, thoughts?

Postby jimmylegs » Sun Jun 02, 2013 10:30 am

jim can we get a citation on the eae study you mention? tried searching myself and found this

Zinc aspartate suppresses T cell activation in vitro and relapsing experimental autoimmune encephalomyelitis in SJL/J mice
http://link.springer.com/content/pdf/10 ... 9532-z.pdf
"Zinc aspartate suppressed proliferation as well as IL-2, IL-10 and IL-17 production in stimulated human T cells and mouse splenocytes. Importantly, administration of a medium range dose of 30 μg/day zinc aspartate [1.5 mg/kg body weight (BW)] in a therapeutic manner led to a significant reduction of the clinical severity of the EAE during the first relapse of the disease. A lower zinc aspartate dose (6 μg/day, 0.3 mg/kg BW) had no significant therapeutic effect on the severity of the EAE, while administration of higher zinc aspartate amounts (120 μg/day, 6 mg/kg BW) led to more severe disease."

try multiplying those doses up to match your body weight and see what you get. the ineffective dose for me is almost 25mg per day. basically twice the RDA and it's not enough to help EAE. the high dose is well over 450mg of zinc per day. the medium, beneficial dose is over 100mg, which is the highest daily amount I have ever taken, on the advice of my doctor, to correct zinc deficiency.

all in all, this research appears to confirm what is really common sense, that you can have both too little and too much of a good thing. it's finding the sweet spot that counts. :)

I take 50mg/day on a regular basis, when i'm being strict with the regimen. numerous diet/nutrition sites for ms recommend daily zinc intakes in the 25-50mg/day range.
READ ME key info on nutrient targets - www.thisisms.com/ftopict-2489.html
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
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Re: My ms regimen, thoughts?

Postby Jimpsull » Sun Jun 02, 2013 11:23 am

I am referencing page 93 of "Dietary Supplements and Multiple Sclerosis, A Health Professional's Guide" by Allen C Bowling, MD, PhD and Thomas M Stewart, JD, PA-C, MS

They in turn reference many other works. As near as I can tell the EAE results come from an article in the Journal of Neuro Toxicology (1990:;1:443-450) by Schiffer, Herndon, and Eskin.
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Re: My ms regimen, thoughts?

Postby Jimpsull » Sun Jun 02, 2013 11:29 am

Couldn't find the article, here is a link to Dr Herndons home page:

http://m.ummchealth.com/doctors/herndon_robert/
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Re: My ms regimen, thoughts?

Postby jimmylegs » Sun Jun 02, 2013 12:09 pm

found it

Effects of altered dietary trace metals upon experimental allergic encephalomyelitis. (1990)
http://www.ncbi.nlm.nih.gov/pubmed/2284050

from the abstract it is unclear whether zinc is being increased to toxic levels, or used to correct deficiency. with zinc ms patients need to be careful not to have too much, but also need to guard against too little.

here are the results of a search for zinc in the book you mention
http://books.google.ca/books?id=g9fuxaV ... nc&f=false
at first glance i'm not seeing good research citations but that could just be due to my not having hard copy.

"Dietary Supplements and Multiple Sclerosis, A Health Professional's Guide" appears to have been published in 2004, here is some more recent research to consider:

Assessment of Serum Magnesium, Copper, and Zinc Levels in Multiple Sclerosis (MS) Patients (2007)
"Mean serum levels of magnesium, copper, and zinc in MS patients were significantly lower than control group (1.87 ± 0.37 , 110.7 ± 19.5 , 85.4 ± 13.5 VS. 2.22 ± 0.24 , 133.7 ± 13.4 , 110 ± 8.3 respectively) (P< 0.001)."

85.4 for zinc is only 13.1 umol/L. that's a pretty standard low-normal level seen often in ms patients. meanwhile healthy controls in various studies are sitting at more like 120 ug/dL / 18.5 umol/L (for once the controls levels in this particular study - 110 that is - are actually half decent). the normal range according to WHO is 11.5-18.5 umol/L.
READ ME key info on nutrient targets - www.thisisms.com/ftopict-2489.html
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
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