This Is MS Multiple Sclerosis Community: Knowledge & Support

Hi there,
I'm hoping to get some feedback on my regime. I'm battling optic neuritis (original flare was in March 2012 with improvement but not full recovery and then a worsening in December).

I exercise 5x a week for 45 minutes (running, elliptical, biking) plus 2x a week yoga
I eat gluten & dairy free, tons of green smoothies, fresh fruit and veg, salmon and lean red meats.
I also add to my smoothies coconut oil, dulse flakes, spirulina, aloe juice, hemp hearts and
Chia.

My supplements include: (mostly natural factors brands)
- 2x Sisu Multiexpecting (prenatal vitamin. Prenatal due to consistent low iron)
- 3x lecithin
-3x cod liver oil
- 1x PS
- 2x Udos Blend (3-6-9)
- 2x Vitazan Sterols & Sterolins
- 4000IU Vit D
- 1x Zinc
- 2x probiotics
- 1x coenzyme Q10
- 1x sublingual B12
- 1x Potassium Citrate
- magnesium citrate powder before bed for sleep

Am I missing anything important, particularly something that could help heal my Optic nerve, or something that a deficiency of could cause optic symptoms?

I'm desperate at this point. I was living on the hope that I would fully recover as I have from my previous relapses but the 1 year mark is closing in on me and I'm getting scared that this might be for the rest of my life.

I don't know all of my actual levels (I want to get those from my neuro at my next appointment) but I do know that my iron is chronically low (hence the prenatals, dulse, green smoothies and red meat!) and my B12 is "high" by my neuros standards, whatever that means!

If you need actual meaaurents per pill, I am get those... I just am not at home right now!

Any help or suggestions are greatly appreciate!

Angie

There are several numbers you need to always know. Vitamin D, vitamin B-12 and weight ( blood pressure). You seem to be doing all the right supplements and exercise. I cut way back on eating red meat. I had a problem with UTI's and I found out from my doctor that eating to much red meat protein could be the cause. I have substituted more spinach and green veggies. I haven't had a bladder infection for a year or more. The only concern with this is getting enough essential amino acids. Amino acids can be supplemented by using Braggs Liquid Aminos. Good luck

heya, yes pls on product dtls when you get the chance - specifically,
can you link up to a product detail on the sisu multi-expecting? looking for retinol vs beta carotene etc.
how much cod liver oil per serving? how much vit D and vit A per serving?
what is PS
zinc form and serving size pls, also is it balanced with copper?
potassium serving size?
magnesium serving size?

_________________
my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com

Jimmylegs! YES, I was hoping you would reply!

Here is the SISU details: http://www.sisu.com/sisu/products/produ ... 701&id=126

(all are weights/tablet or capsule)
PS = Phosphatidul serine (100 mg
Sublingual B12= 1000mcg
Coenzyme Q10 = 60mg
Potassium Citrate (99mg)
Magnesium citrate (250mg)
Sterols & Sterolins (240mg)
Super Cod Liver (
Lecithin (1200mg)
Zinc (25 mg -> 1mg Copper/day in the SISU, 20mg Iron in SISU, and 4 Mg Zinc in SISU)
ultimate multi probiotic = 3 billion cfu lactobacillus casei
1.33 billion cfu lactobacillus rhamnosus
1.20 billion cfu bifidobacterium breve
1.2 billion cfu bifidobacterium longum
1.20 billion cfu lactobacillus acidophilus
1.2 billion cfu lactobacillus plantarum
1.20 billion cfu lactobacillus rhamnosus
.6 billion cfu bifidobacterium bifidum
.12 billion cfu lactobacllus fermentum
.12 billion cfu lactobacillus salivarius
.12 billion cfu lactobacillus paracasei
.12 billion cfu bifidobacterium lactis

Udos = 753 mg cold pressed unrefined flaxseed oil & 10 g evening primrose seed oil

Super Cod Liver Oil = 2500 IU Vit A & 200 IU Vit D

I forgot to add that I take 4x Macasure (which I think is now Vega Maca?) 3 weeks on, 1 week off.

Any more questions?

Thanks so much for taking the time. I appreciate it!

lol! great detail i'll be back later with response - have to do more work offline with my current access. ttfn!

_________________
my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com

okay here's some response:

Here is the SISU details: http://www.sisu.com/sisu/products/produ ... 701&id=126
i will check this separately

(all are weights/tablet or capsule)
PS = Phosphatidul serine (100 mg)
- i have never heard of this

Sublingual B12= 1000mcg
- sounds good for as long as you need it (you should absorb better when/if zinc levels approach optimal)

Coenzyme Q10 = 60mg
-fine as an interim thing, in the long term you want to support your own production of coQ10

Potassium Citrate (99mg)
- you would need to take 35-42 of these each day, don't waste your money

Magnesium citrate (250mg)
- good for bedtime and regularity, for absorption find magnesium glycinate

Sterols & Sterolins (240mg)
- no comment

Lecithin (1200mg)
- i have done this in the past, sounds fine

Zinc (25 mg -> 1mg Copper/day in the SISU, 20mg Iron in SISU, and 4 Mg Zinc in SISU)
- not bad. if you can get serum ferritin, copper and zinc this will tell you if you need to make any adjustments

ultimate multi probiotic
- sounds good i'm not an expert but i think good biochemistry and a healthful diet is most of what you need to support healthy GI microflora

Udos = 753 mg cold pressed unrefined flaxseed oil & 10 g evening primrose seed oil
- sounds good

Super Cod Liver Oil = 2500 IU Vit A & 200 IU Vit D
- i will check the sisu details and get back to you on this.

I forgot to add that I take 4x Macasure (which I think is now Vega Maca?) 3 weeks on, 1 week off.
- do you have a link to product details?

ttfn!

_________________
my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com

You could consider adding Inosine and resveratrol to that list. Inosine is neuroprotective and an anti oxidant. Resveratrol also a good anti oxidant.

Interesting observations in this link

http://www.townsendletter.com/Dec2012/e ... d1212.html


I take 500mg of inosine most days and 200mg of resveratrol. Have done since ON attack in November 2010. Eyesite is now 100% and have not had any relapses since.

inosine is a band aid imho. measure the zinc and uric acid.
when uric acid is low, it can be a symptom of low zinc. so if one is low, the other will probably be low also.
yes inosine can boost uric acid and basically mask the underlying low zinc issue. inosine is not a satisfactory replacement for zinc, it just corrects one of many many manifestations of zinc deficiency.
when you don't have sufficient liver stores of zinc to detoxify ammonia by turning it into uric acid, it can be trouble.
i would like to see a study examining whether supplemental inosine can reduce ammonia levels.

The brain in acute liver failure. A tortuous path from hyperammonemia to cerebral edema
http://link.springer.com/article/10.100 ... -3?LI=true

Plasma-zinc in health and disease (1970)
http://link.springer.com/article/10.100 ... -3?LI=true
'...data have accumulated relative to a role of zinc in DNA and RNA synthesis, and there have been sporadic reports of low circulating zinc levels in clinical disorders such as liver disease,' pernicious anaemia,10 thalassaemia,11'

Hepatic zinc content in patients with various stages of alcoholic liver disease and in patients with chronic active and chronic persistent hepatitis
http://onlinelibrary.wiley.com/doi/10.1 ... 2/abstract
'The results of this study underline the fact that zinc deficiency in the liver occurs not only in cirrhotics but also in less advanced alcoholic and nonalcoholic liver disease.'

_________________
my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com

JL - Id agree it is not a long term solution but I do think there is value in treating a relapse with Inosine (1-2g a day). Once into remission then yes Id stop taking it or switch to a low dose. In the event I ever have another relapse 2 grams a day of inosine is ready and waiting in the Meds cabinet!

I do however take 1-2 grams a week to keep uric acid at the higher end of the acceptable range.

Since you're talking about eyes...

This study, which is available in full text, showed that a form of resveratrol protected neurons in the eyes and spines of rats with EAE.
Most interesting to me, the resveratrol was given in an oral form. The rats ate it and it helped.

I couldn't tell from the article how big a dose was given compared to body weight, but I'm going to be eating more grapes/ raisins and possibly adding resveratrol as another supplement.

Oral Resveratrol Reduces Neuronal Damage in a Model of Multiple Sclerosis
J Neuroophthalmol. 2010 December; 30(4): 328–339.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3312784/

This is not an easy read, but the conclusions were clear. Here is the abstract.

Background

Neuronal loss in multiple sclerosis (MS) and its animal model, experimental autoimmune encephalomyelitis (EAE), correlates with permanent neurological dysfunction. Current MS therapies have limited ability to prevent neuronal damage.

Methods

We examined whether oral therapy with SRT501, a pharmaceutical-grade formulation of resveratrol, reduces neuronal loss during relapsing/remitting EAE. Resveratrol activates SIRT1, an NAD+-dependent deacetylase that promotes mitochondrial function.

Results

Oral SRT501 prevented neuronal loss during optic neuritis, an inflammatory optic nerve lesion in MS and EAE. SRT501 also suppressed neurological dysfunction during EAE remission, and spinal cords from SRT501-treated mice had significantly higher axonal density than vehicle-treated mice.

Conclusions

These studies demonstrate SRT501 attenuates neuronal damage and neurological dysfunction in EAE by a mechanism involving SIRT1 activation. SIRT1 activators are a potential oral therapy in MS.

I should have said, here is most of the abstract. I cut extra content re other treatments to make it more clear.

Bottom line, oral resveratrol in some unknown dosage, helps optic neuritis in rats.