Walter Payton e-mail

[Guest guest]

Janet and others,

I've had so many questions concerning my personal program that I've decided to include a slightly edited version of the first e-mail I sent to Walter Payton which sort of sums up the basics concerning the direction I've taken to deal with my PSC.

I might add that Walter has confirmed through a recent e-mail that he is feeling better as a result of my advice, although he didn't get specific as to what areas he thought benefited him most. When he originally contacted me he told me that none of his doctors had even mentioned the role nutrition might play in the management of this disease and he wasn't taking Actigall. Keep in mind, as unbelievable as it seems, that most medical schools still don't include course work in nutrition. Some doctors even espouse the tenets set forth in the latest fad diets! Ask a pharmacist about drugs, a nutritionist about nutrition.

As far as diet and supplementation are concerned the information in Walter's e-mail is what works for me. I've heard differing opinions from our group concerning these matters and my response is whatever seems to be working for you, "go for it." We each have different bio chemistries and need to find dosages and foods that address our individual needs. If any of you want to order products from the same company that I do feel free to use the discount number in Walter's e-mail below.

Norm

Walter,

It was nice hearing your voice this morning. As I mentioned you are the first person with PSC I've actually talked to on the phone or in person. Your wife Connie and Miss Luna are also very gracious and I enjoyed talking with them. It's important to be surrounded by people who care.

My PSC was diagnosed by blood test and ERCP by doctors at UCLA in 1993. My symptoms weren't too great at the time but they got worse. Fatigue was very noticeable, I suffered jaundice (yellowing in the eyes, etc.) and had bouts of cholangitis with fever and chills that almost shook me to death. After my ERCP one of the UCLA doctors told me I had about 5 years to live and when his partner saw the look on my face, chimed in with..."maybe about 10".

Anyway, I was stunned! As an athlete and health educator I didn't know how something like this could happen to me! Well I passed the 5 year mark and I feel as good as I ever have. I'll share some of my ideas and things I've done that I feel have helped me deal with my PSC.

CAUSE: As to the etiology of this disease (cause) there may be a genetic link. I had my blood tested for the histo compatible antigens HLA B8, HLA DR3, and HLA DRW52a, and sure enough they were all positive suggesting a genetic connection. I remember my dad, who died of liver cancer, taking tums and alka seltzer after meals and complaining of digestive problems. Dad must have passed on those genetic markers. There are indications that PSC may be caused by other means as well.

DIET: When you eat fats it sends a signal to the liver and gall bladder to secrete bile to help emulsify the fats you are ingesting. We with PSC need to eat foods low in fat to reduce our bile production so it won't back up in our constricted ducts and damage our livers. We also need a moderate amount of lean protein like turkey and chicken breast, non fat milk, yogurt, etc. to help rebuild damaged liver cells. I will be glad to send you a low fat regimen that I designed for our athletes here at the college. By the way we have one of the top Junior College programs in the nation. Gifford went here.

Remember to stay well hydrated. Drink enough water so that your urine is clear. A reasonable eating plan for us PSC'ers would be 65-20-15 or a 70-15-15 plan. 70% carbs, 15% proteins and 15% or less fat. Some of the folks in our PSC support group say they felt better after becoming vegetarians. That's a personal decision one must make and being a pure vegetarian requires some thought in order to combine the right foods for complete protein requirements.

EXERCISE: Walter, we still need to exercise to some extent. We need to keep our circulation moving to expedite the flow of bile and other metabolites that we accrue because of our daily routines as well as our disease. I don't know how you are physically at this time, but try an exercise bike, walks, pumping light iron...just do it! as Nike says. Grab Connie and Miss Luna and stride the neighborhood. It'll be good for everyone! Good for the mind and soul too.

PHARMACEUTICALS: I'm stunned that your doctors don't have you on Actigall (ursodeoxycholic acid)! urso is a synthetic bear bile (you've always had good luck with bears) that is extremely mild. The folks in our PSC support group have had virtually no problem with it. Originally developed for gallstones, Actigall has been shown to have value for us PSC'ers on an experimental basis. It lowers our LFT's (Liver function test values), thins our bile and when taken in larger doses may even stop the progression of ductal sclerosing (narrowing).

A British researcher has found that 20 mg/kg of Actigall may do the trick. That translates into about 1800 mg/day for you. That's what I take and it's been fantastic! You need a prescription for two 300 mg capsules, three times a day...that's 1800 mg total. I have a doctor that will write you a prescription if you need one. His name is Ward Dean M.D. and he is an expert in the field of gerontology and anti-aging medicine. Just let me know and I'll have doctor Dean mail you a prescription or call one in for you. The sooner you get on this stuff the better.

NUTRITIONAL SUPPLEMENTS: After a lot of research I found a company named Vitamin Research Products (VRP) that sells only the finest, pharmaceutical grade, quality controlled supplements you can find. I've been taking their products for several years and attribute much of my success in dealing with this disease to these top quality supplements.

The company is a direct mail order business that encapsulates their own formulas. These products come straight from the factory which makes them fresher as well as less expensive. The company has a full time PhD in biochemistry who concentrates exclusively on quality control and research.

To order any of the supplements recommended below or to receive a free catalog call 1- . Give them number 114019 for a 20% discount. I've listed the catalog number before the product to make it easier for you to order and when you receive your products you should get a new catalog. If you go to www.vrp.com you can read about these products on VRP's web site, as well as general research articles about liver disease, etc. I encourage you to do so. That way I won't have to go into so much detail here.

2203 Extend Core: Basic Vitamin/mineral supplement. one capsule with each meal(3)

1600 HepatoGen: Walter, this new formula includes many of the things I was taking separately like Silymarin (milk thistle) which is an incredible herb that studies have shown stimulates liver protein synthesis to build healthy cells and protect against

leukotrienes which are produced by the oxidation of certain fats.

HepatoGen also contains Dandelion powder extract, Green tea extract, Artichoke powder extract, Betaine, Turmeric extract, Liver concentrate and Betaine. Start out with three capsules a day working toward 6 capsules a day.

960.1 Bio Pro This formula contains probiotic bacteria that will help you digest your food better and hopefully help with your stomach problems. Take one with each meal

553.1 Ginger Extract May help with the nausea you've been having..two or three a day

668.1 Malate Complex Has helped with chronic fatigue and fibromyalgia which may have some of the same etiology as PSC. Three a day

333.1 Ethyl EPA Fish oil caps..immune system, cardio and may help bile flow.

Take one of these a day.

940.1 Melatonin One 3 mg. capsule before bedtime to help you sleep. Connie mentioned you were having difficulty sleeping.

Melatonin controls our sleep mechanism in response to darkness. We produce less as we get older. It is very safe at this dose and is also a powerful anti aging, antioxidant.

464.5 Creatine This is one you may want to consider to gain some of your weight back in a safe way. Take one heaping teaspoon full per day with juice or carbohydrate of some sort to facilitate it's transport into your muscles.

I'm taking many other things too, but these are basic supplements that can help get you started. We can talk about those later.

The PSC web site is: http://fly.to/pscs You might want to bring this up and scroll down to read about some of the people in this support group, a little more about PSC, etc.

If you want to join the support group, which is rather small but very supportive and very knowledgeable you can e-mail who started it, at WYBEAR21aol and she will place you in the group. You don't even have to do say anything if you don't want, just read and if you have a question ask. These people are really cool and we are all bound together by PSC. They'll go out of their way to help anyone.

I think something like PSC gives us a new perspective on life don't you? I'm just happy to see the sun shining through my window in the morning, work in my yard, teach my students and ride my bike.

Bear connection...listen to this Walter... My girlfriend who was with me at diagnosis and helped me out initially was named Bear. Actigall (ursodeoxycholic acid) the only medication for PSC and a substance that may help save our lives is Bear bile. WYBEAR () is the girl who started the PSC support group, Penny a lady in the PSC group sent me a story about bears, I collect Bears and You are a Chicago Bear!! Go Bears! Isn't that amazing!?

If you want Dr. Dean to write you a prescription for Actigall let me know. Get a copy of your blood work if you can and I'll look it over for you. You have a lot of courage for coming out the way you did. Now that you have done it maybe I will too. We need to get more people on the organ donation program. I hope this helps.

To Our Health,

Norm