Really, now, what CAN they do for me?

[knuckle]

I don't listen to them anymore. I've taken my (now SPMS) into my own hands.

After living with MS now for over 20 years, taken just about all the drugs, I've come to the conclusion that the only way to truly stabilize the disease is to strengthen your immune system, nourish your myelin sheath, and reduce inflammation.

I strengthen my immune system by increasing Endorphin production. Endorphins are hormones that influence T-cell proliferation and thus "regulate" immune system response. I know "they" say that MS is the result of an overactive immune system where rogue T-cells have for some reason decided to attack your myelin, I don't think outright immune system suppression, especially long-term, is the answer and can be potentially dangerous. You need to address the underlying cause.

You regulate/generate endorphins by taking...

Low Dose Naltrexone (LDN) every night.
Vitamin D3 - about 10,000iu spaced over the day (or get a lot of sun )
Malic Acid - 600mg 2-3X a day (read my "Malic Acid and Magnesium" post and it's relation to the new BG12 drug)
Apple Cider Vinegar - 500mg 2X daily

To nourish the myelin sheath...

Magnesium - about 800mg spaced over the day.
Calcium 2 AEP - 500mg 2X a day
Lecithin - about 3000mg daily
B12 - 1,000mg daily
Fish Oil - 3,000mg daily
Flax Oil - 2,000mg daily
Avacado Oil - 2,000mg daily
Octacosanol - 8000mg 2X a day

To reduce inflammation, as well as protect neurons...

N-acetyl Glucosamine - 750mg
N-acetyl Cysteine - 250mg
Acetyl L Carnitine - 500mg
L-Arginine - 500mg 2X a day
Dimethyl Glycine/Glycine 2X a day
Alpha Lipoic Acid - 300mg 2X a day

And these spices...

Curcumin - 800mg a day
Cayenne - 4 capsules a day
Cinnamon - 1,200mg a day
Saffron - 30mg a day

I try to follow a low-fat diet, little red meat, fruit at every meal, snack on apples, dried apricots and almonds, and almost no sugar.

Now that is a lot of supplements and it costs about $75 a month, but I don't spend money on MS drugs outside of Baclofen and 4-AP which are very cheap and LDN at about $25 a month.

Over the past four years adding these supplemments based on research, I can report no new MS symptoms. Still have the old, all related to spinal lesions and they're probably here to stay.

No MS fatigue, eyesight is excellent (optic neuritis went away), think fine, talk fine, much less spasticity, sleep fine, no leg jerks. I've lost some weight, havn't been sick at all, and generally feel pretty good with the exception that I can't walk without assistance.

If you're interested, I'd recommend starting by googling each supplement with "multiple sclerosis".

MS and other autoimmune diseases seem to be closely related, specifically Psoriasis. Consequently, any treatment for Psoriasis is probably beneficial for MS. This seems to be substantiated by the new Biogen BG12 drug, which is also used for Psoriasis. I think you can get similar benefits by just taking Malic Acid several times a day, which happens to help people with Psoriasis (along with LDN and just about every supplement listed here if you google the with "psoriasis".

I'd suggest asking your neuro how BG12 (dimethyl fumarate or "Fumaric Acid Esters") works and why it is used in Psoriasis. I'll bet they have no idea. In fact, ask them why vitamin D helps with MS, and Psoriasis. Why Malic Acid/Fumaric Acid, the precursors to Fumaric Acid Esters in the Citric Acid Cycle, help Psoriasis. Or why LDN works for both MS and Psoriasis.

All neuros do is prescribe FDA-approved drugs, schedule MRIs, frown as each drug seems to fail as the disease marches on, and prescribe another drug more toxic than the last. Now they are all excited about BG12.

BG12 proves why immuno-suppression is the wrong way to treat MS, Psoriasis and other autoimmune diseases.

Originally Posted by knuckle

All neuros do is prescribe FDA-approved drugs, schedule MRIs, frown as each drug seems to fail as the disease marches on, and prescribe another drug more toxic than the last. Now they are all excited about BG12.

Well said. New drugs help a Neurologist feel like he can finally be a really useful engine

[CougarMama]

Hi knuckle! I was looking over your list of supplements (pretty impressive!) and was wondering how you came to the dosages you take and the timing of the doses? I can tell a lot of research went into this and was just curious. I currently take Vitamin D (6000 units daily), acetyl l carnitine (300 mg) alpha lipoid acid (200mg) and cranberry extract. I was also taking fish oil but recently stopped that although I might start back since I notice a difference in the way I feel. Thanks!

[knuckle]

Hey CougarMama,

How do I get to the doses? A variety of ways but I consider myself a lab rat. As long as it's not toxic, and makes sense in the scheme of things, I'll include it in my regimen. However, everything in moderation.

For Alpha Lipoic Acid I take what Dr. Burt Berkson takes (300mg 2X a day) and he literally wrote the book on ALA ("The Alpha Lipoic Acid Breaktrough").

He also advocates LDN with ALA and I recommend everyone watch this lecture:

Dr. Burt Berkson Presentation on LDN and Alpha Lipoic Acid Therapy for Cancer & Autoimmune Disease

http://glasgowldn2009.com/2009/04/ld...erence-video3/

For Malic Acid, I read about the study done with Fibromyalgia patients for pain and fatigue. I can not emphasize enough how important Malic Acid is and it's relationship to how BG12 works.

Everybody should read more about Calcium 2-AEP. Here's a good link:

http://www.nutritionreview.org/library/calcium_aep.php

I spent time learning about what goes into the myelin sheath, how neurons work, etc.

I've also spent a lot of time looking at home remedies for different autoimmune diseases, what substances are in the home remedy, and then looking at the supplements.

Based on what I learned about Curcumin, that lead me to the MS research on Cinnamon, Saffron and Cayenne - all part of diets in countries where there are low incidences of MS.

It's become a hobby and a puzzle, and I think I've figured it out. You may acquire MS by a virus, or genetics, or a stressful period in your life, etc., but the best way to control the disease is by increasing endorphin production and building cellular defenses. You do this by diet, exercise, direct sun/vitamin D and supplements. Supplements because there is no way you can get this type of nutrition on a daily basis through food.

Unfortunately, I did not discover this early upon diagnosis and I wasted 15 years blindly listening to my neuro and working my way through all the drugs. I thought all I had to do is take my shots and everything would be fine.

A lot of people on this board think the same thing. However, with the results of BG12, we have evidence that immuno-suppression is the wrong approach and immune-regulation/modulation, the role of endorphins, is more effective. This supports why all these supplements help control MS.

[muse_7]

Thank you Knuckle! I have pretty much been using all of the same supplements since last September with very good results along with dietary changes. I juice daily, take coconut oil and have cut processed food, meat and sugar out of my diet (similar to Swank diet but vegetarian).

The thing that strikes me is I found the supplements that I am taking (again almost identical to your list) by researching inflammation and MS in general. I do take 3 mg of LDN nightly also, but I consider that my backup plan since my progression stopped/slowed with the diet and supplement changes. The endorphin enhancement of LDN made sense to me. But I really put together my list concentrating on stopping inflammation/damage.

Seeing your post just kind of confirmed for me that I am on the right track even though I came at it from a different angle.

[celeste]

Have you tried Ampyra? I have PPMS & feel like it's the only thing keeping me going. It doesn't work for everyone but if you have good health insurance it might be worth a try. The manufacturer also has a patient assistance program to help with the cost. It doesn't stop or slow progression but at least I can feel better for awhile longer.

Ampyra helps me both feel & walk better & have more energy.

[HereIam]

Hi Celeste and thank you for checking in here. Yes, I have tried Ampyra and I did not do well on it. I was terribly dizzy and spaced out and nauseated. Very frustrating, I do not medicate very well at all and am allergic to many.

Glad it's helping you, though!

[kygirl]

Knuckle,

I wanted to ask you for this info privately, but I didn't see a way to send a private message to you - I don't know if this forum allows PMs.

I'm a RRMS'er whose recently joined the nutrition bandwagon (as opposed to DMDs). I have had the disease for 10years now. Luckily, I have had no major decline in my physical abilities, but I have noticed a major decline in cognitive and memory skills. As an engineer, this has had an long term effect on my career, and I've now left engineering.

I don't know if its possible to reverse any cognitive effects (likely its not), but I need to (for my own sanity) actively work on trying to prevent further damage. Would the supplements you mentioned above help with that? Where do you purchase your supplements that you only spend $75/month? I recently purchased some ACLAR from Walgreens and it was almost $20!

I'm so sorry to take this thread off topic, but being relatively new to the forum, I didn't see where I could send a private message. Hope you guys forgive me!

[knuckle]

Hi kygirl,

I buy my supplements at Swanson's Vitamins online and I seem to place an order every three months or so. They have sales pretty often.

I take LDN as well.

Regarding cognitive issues, maybe you should do a little research on Alpha GPC:

Alpha GPC (glycerylphosphorylcholine) is a supplement that has been used for memory problems.

Alpha-GPC Research

http://www.longecity.org/forum/topic...-gpc-research/

Glycerylphosphorylcholine is a drug prescribed in Europe to treat neurological disease. It is sold in the United States as a dietary supplement to protect against age-related brain deterioration and memory loss.

Alpha GPC is basically a more refined version, or something along those lines, of Choline Citrate (google: choline citrate multiple sclerosis)

Both supplements and I just ordered some Alpha GPC to check it out. While I don't have cognitive problems, the mechanism behind Alpha GPC makes sense that it would help with MS.

Finally, usually one of the first things LDN helps with is "brain fog", lifting it almost immediately, followed by reductions in fatigue and pain. See the "Useful LDN Links" thread in the Medications Forum. Also visit: LDNaware.org