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My first exacerbation was in 1996, so I have had MS now for 8 1/2 years. I have had a total of four exacerbations, each milder than the last. I have no disabilty, and no symptoms of MS, and my last exacerbation was three years ago.

However, I have no idea whether to credit my regimen for my good health thus far. I strongly suspect someone else with more aggressive disease might have followed my regimen and yet be severely disabled. Certainly it is possible that I have benefitted from this regimen.

I began taking a 40 mg dose of Lipitor (a statin drug) in 1997. (But despite a healthy diet and running 5 miles per day, my cholesterol was 330 at the time.) Because I take a statin, I also take CoQ10, but not at the dosage level that the Parkinson's clinical trial indicated would be neuroprotective for Parkinson's.

I began a low-saturated fat diet (a modified Swank diet) supplemented with fish oil in 1997, along with alpha lipoic acid and ginkgo biloba. I take between 2 and 6 g per day of fish oil, and eat either salmon or tuna several times per week.

I take 1200 - 2000 IUs per day of Vitamin D during the darker months, and try to get at least some sun regularly.

I began Copaxone in April of 2000.

If I were suffering from fatigue, I would take acetyl L-carnitine (ALCAR) and aspirin. If I were progressing, I would switch to an interferon or IVIg and at some point would give LDN a try. I might have my serum uric acid levels checked and try inosine. I would add a few other supplements, primarily antioxidants.

If none of that worked, I would move to Novantrone, then to other FDA-approved therapies which could be taken off-label like Rituxan or Daclizumab or CellCept. Not sure that I would ever risk ASCT (autologous stem cell transplantation) unless the risk of death were significantly reduced.

Mark

Mark,

Thank you for posting this excellent summary. It is wonderful to hear of your success and I hope that others are helped by your research, diligence, and willingness to share.

Welcome to the site,
-a

Hi Arron,

As I wrote in my first post here, I think the creators and administrators have done a great job with this site, and I congratulate and thank you for it. I appreciate your emphasis on therapeutic options.

Mark

Mark,

Welcome. Great to see you here!

Thanks Daunted. I see a few other familiar "faces" here.

Mark

Hi XO,
I am just courious as to how you found out that statins were good for ms. Did you take it only for your cholesterol? Carole

Hi Carole,

I didn't know the potential of statins in MS when I began taking Lipitor. The studies of statins in EAE -- the rodent MS model -- had yet to be published. Some studies had suggested that statins might inhibit nitric oxide, and that nitric oxide might be bad in MS, but really I was just taking Lipitor for high cholesterol.

Needless to say I was pleased when studies suggesting statins might be effective in MS first appeared.

Mark

I have read many "success" stories regarding diets, sat fats, MS,....etc,etc. Unfortunately, it seem most of them have always come from women. Finally!! A success story coming from one of us guys!

Just some food for thought( low sat. fat food of course ). Perhaps your success is related to the lowering of those bad lipids. Thus, you could credit the diet and the statins.

If you don't mind, what is your history of LDL, HDL, and cholosterol after you began your regimen. Have you had blood work regularly to monitor? I caught the part about cholesterol @ 330 before you started.

Also, where do you live? Looking at the D supplementation your taking, and the possible lack of sun depending on where you're from.

I have been taking 1200-1600 i.u. of vitamin D3 daily and visiting the tanning salon a couple times per week. I live in Michigan, 3 of maybe 4 events I can now call exacerbations have occurred in January - April. Certainly the low D months also the sedentary months for me due to weather( I work outside). My forth "event" occurred in Sept. Oct. several years ago. I used to work an office job, although I can't say for sure, I think I may have been lacking sun exposure that whole summer and fall due to hours spent @ the office in sports coat and tie(?).

Congrats. on your ongoing success, you give us guys a hope I have had a hard time finding elsewhere.

Thank for sharing your story!!


Treez

Treez

treez wrote:Finally!! A success story coming from one of us guys!
... I have had a hard time finding elsewhere.

Look out for Prof George Jelinek's book. He's an Aus medic with MS who sets great store by diet (modified Swank) and Vit D. <shortened url>
I found he's account encouraging too. (I'm told a new edition is due soon.)

Hi treez,

I am from Georgia, but moved to Virginia in the early 90s. My onset was in 1996 in Virginia.

My cholesterol prior to statins was 330 with HDL about 40 and LDL well over 200 (as I recall). My last cholesterol reading was 170 but with an HDL of 92 (and LDL well under 100 -- I don't remember the exact number).

I was particularly pleased with my HDL. I don't think the statins completely accounted for the HDL rise -- my diet now includes a lot of soy (Boca burgers and soy milk), and I suspect this has helped.

I have often wondered whether in some of us high cholesterol might be directly related to our MS. I have always thought MS was heterogenous, and not one disease but several sharing certain common characteristics.

Mark

Last time I had my cholesterol checked, I was at 208. Couldn't tell you my HDL or LDL's without digging out my labs though. Your improvement is substantial! Congrats! Duel benefits from the statin huh?

So you really don't know what had the most effects.

Mark,

What I find remarkable is how similar our regimens are. For me, no Copaxone, Betaseron here. Very few of the side effects Interferons are known for. I am taking 1200 or 1600 D3 daily, and visit the tanner 2 or so times per week.......until I can start working outside without all these clothes(spring is coming to Michigan someday...). Started Swank about 1 month ago, still learning that one! Supplement Swank with 4 g. fish oil/day. Also Primrose oil for the GLA component (90mg GLA). B complex on the Betaseron days. And of course, multivitamin & mineral.

Treez

NEWS FLASH !!!

Been doing the Swank diet since April. Feel great! compared to how I was. No exacerbations, some mild return of symptoms in times of stress, and believe me, it's been a very stressful summer!

Biggest shocker......recently had a physical, just the yearly thing....you know. Did basic bloodwork... Cholesterol was 208 last checked ( 3 years ago?) after about 6 months on diet.....147! No drugs, no herbs, just healthy low Sat. fat diet. The good stuff (HDL) was a liitle low though. Have to work on that now.

Don't anyone tell me diet doesn't work!!

Visit this site....all the veterans will attest to it!

http://www.swankmsdiet.org/

Regarding Swank diet. I had viewed with some skepticism. Then got the George Jelinek book (Austrialian MD diagnosed 6 years ago with MS). He is a strong supporter of Swank (low saturated fat diet) and in fact has a pretty good analysis of why Swank research was not taken more seriously. Swank started his research 30+ years ago before many of current protocols for trials were introduced (placebo, double blind etc). Its only from perspective of those protocols that the research and its results is flawed...for its time it was well structured. Someone else may wish to comment on how accurate that assessment is...but combined with more recent research that Jelinek quoted on diet/fats (and similar research referenced on this board), I've been reluctantly convinced. Reluctant because I have always eaten very conscientiously, but Swank is in fact lower in saturated fats than even a conscientious person might be able to follow without some regret. Anyhow, PM me if you want to know how to get Jelinek's book (or I could lend, its about $30).

I have hubby following the basic principle of the Swank diet also with great results.http://swankmsdiet.org/index.php/diet/about/

I'll put a at the ones we follow

QUICK REFERENCE

1. Saturated fat should not exceed 15 grams per day.

2. Unsaturated fat (oils) should be kept to 20-50 grams per day.

3. No red meat for the first year. We have 4 oz per week

4. After the first year, 3 oz. of red meat is allowed once per week.

5. Dairy products must contain 1% or less butterfat unless otherwise noted.

6. No processed foods containing saturated fat.

7. Cod liver oil (1 tsp. or equivalent capsules) and a multi-vitamin and mineral supplement are recommended daily.

DAIRY PRODUCTS. All dairy products must be non-fat or contain no more than 1 gram of saturated fat per serving. The recommended daily amount is two (2) servings.

(1 cup = 1 serving)

The following foods are permissible in any amount:



Non-fat milk or skimmed milk yes

Evaporated skimmed milk

Powdered skimmed milk

Non-fat buttermilk (without butter bits added)

Non-fat or dry curd cottage cheese yes

Fat-free cheese yes

Non-fat sour cream yes

Non-fat yogurt yes

Non-fat ice cream as a treat only

Butter Buds®

Molly McButter®

Cooking sprays


Products to be avoided are as follows:


Margarine never

Butter never

Shortening never

Lard never

Cocoa butter never

Coconut oil never

Palm oil never

Hydrogenated oil never

Imitation dairy products never


EGGS. The white of the egg contains no fat. The yolk contains 5 grams of mostly saturated fat. You are allowed three eggs per week, but no more than one per serving. One complete egg = 5 grams of saturated fat. I allow 2 per week

It is not necessary to count the small amount of fat or oil found in the grains, cereals, rice and pastas in your diet. The recommended daily amount is four (4) servings.

GRAINS & CEREALS. You are encouraged to use whole-grain products as much as possible. Refined, un-enriched products provide very little, if any, vitamin source. All bread products are permissible. This includes white bread, whole wheat bread, sourdough bread, English muffins, bagels and all the other grain breads available. The natural grains provide bulk in the diet and aid in elimination. Although these products may contain a small amount of saturated fat, it has been accounted for in the body of the diet. Avoid items such as muffins containing an undesirable oil, pastry, cakes, pies or any other product made with hydrogenated palm or coconut oil, lard, butter, margarine, shortening or vegetable oil that is not defined.

Cold and hot cereals are permissible on the diet. The most economical are usually the ones with the least amount of saturated fat. Cheerios®, shredded wheat, Wheaties®, puffed rice and Grape Nuts® are almost fat-free and less expensive. Watch granola; it is usually high in fat. All hot cereals are permissible, e.g., Cream of Wheat®, Cream of Rice®, oatmeal, cornmeal and any other rich grain used for cereal.

PASTA & RICE. Refined pastas and rice are permissible in any amount, but whole grain pastas are preferred.



CRACKERS. Snack crackers containing no shortening, butter, margarine or processed oils are permissible. Rye-Krisp®, melba toast, matzo bread, non-fat saltines, fat-free graham crackers and non-fat tortilla chips are acceptable snacks. Avoid all commercially prepared chips and fancy crackers.

PASTRY. Commercially-prepared pastry usually contains shortening, butter, margarine and/or processed oil. Therefore, you should avoid these foods.

Angel food cake does not contain egg yolks or shortening and can be used as an acceptable dessert.

COMMERCIALLY PREPARED FOOD. Any boxed or canned food containing processed oil (hydrogenated), shortening or butter and exceeding 1 gram of saturated fat per serving is to be avoided. Some acceptable products are available. Read labels and be sure to check serving size.

CONDIMENTS. With the exception of mayonnaise, condiments such as mustard, catsup, relish, barbeque sauces, taco sauces, sweet & sour sauces, herbs and spices are permissible in any amount. Mayonnaise contains unsaturated fatty acids (oil) and must be counted in your daily oil allotment.


2 tsp. mayonnaise or salad dressing, commercial = 1 tsp. oil

1 tsp. mayonnaise, homemade = 1 tsp. oil

1 Tbsp. "fat-free" mayonnaise = 1 tsp. oil

Fat-free salad dressings = zero (0) fat and oil


BEVERAGES.
Caffeine. Caffeine-containing products increase nervousness and insomnia, as well as frequency and urgency to urinate. Therefore, it is necessary to limit these beverages to a maximum of 3 cups daily (can be combined). If an increase in symptoms occurs, do not consume caffeine. We use De-Calf only

Example:
1 cup coffee + 1 cup tea + 1 cup cola = 3 cups daily total.

3 cups coffee or 3 cups tea or 3 cups cola = 3 cups daily total.

In whatever way you decide to combine your caffeine, the daily amount must not exceed 3 cups.

Alcohol. Most patients tend to be sensitive to alcoholic beverages. A glass of wine or a cocktail with the evening meal is permissible. Don't follow this at all

NUTS AND SEEDS. Nuts and seeds are good sources of natural oils as well as essential fatty acids. Commercial nut butters that are not hydrogenated or that you grind yourself at the health food store, also contain good sources of oil. Daily snacks of these foods help to maintain a good energy level. The following list is to be used to count your daily intake of oil: Hubby is allergic so none


2 tsp. peanut butter or other nut butters (old-fashioned, non-hydrogenated) = 1 tsp. oil

1/2 oz. (about 10) peanuts, almonds or cashews = 1 tsp. oil

1/3 oz. (about 10) any other kind of nuts (walnut and pecan halves, filberts, hazelnuts) = 1 tsp. oil

3 tsp. sunflower seeds = 1 tsp. oil

3 tsp. pumpkin kernels = 1 tsp. oil

1/3 oz. Energy Snack Mix = 1 tsp. oil (mix together almonds, walnuts, hazelnuts, pumpkin seeds, sunflower seeds and sesame seeds)



FRUITS. Recommended amount is two (2) fruits daily. All fruits are permissible in any amount. Fresh fruits are preferred since they contain the most nutrients, followed by frozen and then canned fruits. huge on pineapple bromelain



The following fruits contain unsaturated fatty acids and must be counted in the daily oil allotment:

Avocados. 1/8 = 1 tsp. of unsaturated fat (oil) = 5 grams

Olives. 3 medium black = 1 tsp. of unsaturated fat (oil) = 5 grams

Olives. 6 medium green = 1 tsp. of unsaturated fat (oil) = 5 grams


VEGETABLES. Recommended amount is 2 cups daily. 1 cup = 1 serving. Vegetables provide the body with vitamins and minerals and are rich in essential fatty acids. You are encouraged to include a variety of vegetables in your daily diet. more like 6-8 cups per day



POULTRY. The average serving is four (4) ounces. 1 0r 2 times a week

Skinned, trimmed white chicken or turkey meat is permissible. Avoid processed meat products such as ground turkey and chicken, which may contain dark meat, skin and fat; luncheon meats made from pressed turkey and chicken; and canned turkey and chicken products. For ground turkey and chicken breast, grind it yourself or ask your butcher to prepare and grind it for you when the grinder is clean. This may cost a bit more.

FISH. All white fish is permissible in any amount: 5-7 servings per week


Cod, abalone, halibut, snapper, smelt, flounder, sole, sturgeon, tuna canned in water, shark, mahi mahi, haddock, perch, pollack, etc.

All shellfish is permissible in any amount:

Clams, crab, lobster, oysters, scallops, shrimp. (For those patients with elevated cholesterol levels, shellfish should be eaten infrequently.)

Fatty fish contains unsaturated fatty acids and must be counted in your daily oil allowance. You are allowed 50 grams (10 tsp.) per day. Packed in water or broth where possible



Tuna, canned in oil
2 oz. = 1 tsp. oil (5 grams)

Tuna, canned in oil, rinsed & drained
3 oz. = 1 tsp. oil (5 grams)

Salmon, Chinook
1 oz. = 1 tsp. oil (5 grams)

Salmon, Coho
2 oz. = 1 tsp. oil (5 grams)

Trout
2 oz. = 1 tsp. oil (5 grams)

Sardines, canned in oil
1 oz. = 1 tsp. oil (5 grams)

Herring
1 oz. = 1 tsp. oil (5 grams)



RED MEATS. During the first year on the diet, red meat is not allowed, including pork. I allow 4oz per wk

Of the following low-fat meats, 3 oz. = 1 tsp. saturated fat. You are allowed 3 ounces (weighed after cooking) following the first year.

Low-Fat Meats
Lamb (leg)

Liver (chicken, turkey, beef, calf, pork) I allow 4 oz

Kidney (pork, veal, lamb)

Heart (calf, beef - lean portion only)

Tongue (calf only)

Rabbit

Venison I allow 4 oz

Elk

Gizzard (chicken)

2 ounces of the following medium-fat meats = 1 tsp. saturated fat. You are allowed 3 ounces following the first year.

Medium-Fat Meats I allow 4oz
Beef (lean only)

Ham (lean only) I allow 4 oz

Lamb (rib, loin, shoulder) I allow 4 oz

Pork (lean only) I allow 4 oz

Veal

Chicken (dark meat, no skin)

Turkey (dark meat, no skin)

Pheasant (no skin)

Squab (no skin)

Heart (lamb, chicken, turkey)

Kidney (beef)

Tongue (beef)

Gizzard (turkey)


VITAMIN SUPPLEMENTS The following vitamin supplements are recommended:

1 tsp. cod liver oil or 4 capsules (equals 5 grams oil to be counted in your daily allotment). Cod liver oil contains highly unsaturated fatty acids and will give you more energy. It also aids in reducing the number of colds and flu you may have. Cod liver oil is high in vitamins A and D. Additional A and D should be restricted to only one therapeutic multiple vitamin and mineral capsule per day (not mega doses). We use food source for this

1 multiple vitamin with minerals (see #1 above). yes

1,000 mg. vitamin C yes

400 IU vitamin E yes

We also take 2000 mg flax oil
B 50 complex
Calcium 333mg
Magnesium 166mg
We started with this regiment in April of this year. We have removed any foods that hubby is intolerant to as well as any allergens. We steer clear of aspartame and no smoking either. Toxins
As well as TBS per Turmeric in cooking per day.