Kickas.org Forums Treatments, Drugs and Alternatives NSD and diet-related; Doesn't seem to be working...

My husband is ending month #2 on the NSD. And it really doesn't seem to accomplish what we'd hoped. At first it seemed great. The headaches were gone, the bone-draining fatigue disappered, the neck pain improved a bit, and the overall achiness was better. Then came the record breaking hip flare, which still has him limping even after 6 weeks. Now all the old pains are back. We did a dairy experiment, and found that when he adds dairy, the headaches return, along with the intestinal explosiveness.

He's still on humira and Meloxicam, and it doesn't seem appropriate to drop either one, since the pain level is still considerable.

I'm testing, testing, testing with iodine, and he's been faithful to stick to the diet. Maybe the NSD just doesn't work for him. He says he'd rather have headaches than skip all his favorite foods all the time...

We're disappointed...

Sorry for the disappointment, but it is understandable.

Personally, I think we are all so different I am not convinced all will respond to the diet. Otherwise we would all respond to the same medications.

Do you eat a lot of processed foods? Supplements? These are two areas that caused me slip ups in the past. Does he have food allergies?

I sympathize with your disappointment, hopefully some answers come along.

Tim

Some people have quicker results then others. Most recently, I remember Kiwi's Husband stuck to the diet for 9 months before he was able to go off his pain meds. It is so worth it when you finally get to that point. I would strongly urge you to continue. In addition to dairy, some also need to eliminate sugars.

Are you keeping a food journal? Do the meds you are taking contain starches? Please list all foods, beverages, supplements, meds, etc. Maybe we can spot something that needs to be eliminated.

I found it easiest to stick to M.O.V.E. Meats, Oils (coconut), Vegetables, and Eggs. NO processed foods. Water is the only beverage. No alcohol, caffeine, nuts or nightshade veggies (peppers, eggplant, tomatoes).

I know its so hard being without our favorite foods. I struggle too. We have to look for other approaches to create joy and happiness in our lives. It can't come from food for us.

Hey, diaperjoys:

The NSD can be difficult and seems almost pointless when we have to give us so much. I think that it takes something as serious as the threat of iritis to keep me on the straight and narrow.

Of course, the LSD was not designed to be done alone, but as an adjunct to be used with a conventional DMARD--sulfasalazine was the primary one used by Ebringer, et al.

I've always remembered my first couple of months on LSD and then NSD when we discovered that. I had very spotty results and had to fast to get more relief and finally gave in to trying the antibiotic approach. I have refined this over the years and now have a very effective AP (Antibiotic Protocol). If your husband is interested, you can send an email request for this. In my opinion, there is no more effective and absolutely no better way to treat AS than through the primary cause, proving the germ connection.

He has gone this far and I would hate to have him learn the tough lessons that I have through the years--don't reinvent the wheel!

HEALTH!
John

I agree. He needs to just except the fact that he can't enjoy food the way he used to. He needs to just enjoy the foods he can eat.

It sounds like he was doing great until he got back on the dairy. It sounds like he may be very alergic to dairy.

I hope that he sticks with it. If it works it will be so well worth it.

Jean,
No, we don't currently keep a food journal, but it isn't as if the food list is very long.

Seasonings:
Herbs - oregano, thyme, etc.
No spices
granulated onion and garlic (both test okay)
Sea Salt

Meats:
Hamburger
Turkey (cooked whole)
Canned Salmon (tests fine)
Chicken breasts
Bacon (ours tests fine)
Bratwurst (from Aldis...I was surprised that it tested just fine)

Veggies (nearly EVERYTHING I've tested is starchy, so we're living off this list):

Leafy greens
Onions
Asparagus
Cabbage

Fruit (again, things that other people say are fine are failing the starch test. i.e., mango, watermelon, strawberries, pears...)

Grapes
Kiwi

Supplements:
Healthy Trinity
Homebrewed sauerkraut
Oils: flax seed, borage, cod liver, vit. E
Miracle 2000 (YUCK!!!! The bottle is almost gone, and I don't plan to purchase another. Looking for replacement ideas)

Meds:
Humira
Meloxicam, NSAID (tests fine)

Other:
Eggs
Mustards (test fine)
Orange Juice (tests fine)
Mayo (tests fine)
Almonds, from BJ's - they are blanched, roasted & salted.
Homemade almond biscuits (these have butter in them, so might present a dairy issue)
Homemade almond cake (also have butter; both these recipies are from Carol Sinclair's book)

Beverages:
Filtered water
Coffee
Red Wine, 1 glass each evening

That's about the sum of it. See any red flags???

Thanks so much!
Cynthia

Hi Cynthia, The meds may test fine, but do they wreck your gut? George

Hi Cynthia,

I don't think you have to worry about the butter.

The only thing I know for sure from your list, that I CAN'T tolerate is orange juice. There is some trace starch. I can drink a glass on occasion, but if I drink consecutively, for 3 or so days, I will flare. I drink fresh squeezed, since I have an orange tree.

So we can see how tricky this gets........... OJ tests fine for you, yet I flare from it. I think it must be the accumulation of a trace amount of starch, that is not showing up in the test.

I'm not familiar, since I don't use many of the items on your list, but in general;

Use only fresh herbs. Anything processd could by chance contain trace starch that could build up if used daily.

I would avoid ALL PROCESSED meats, including the sausage and canned salmon, and see what happens, test how you do without them. Use only fresh, whole foods.

I recall having to give up flax seeds in smoothies, but not sure about the oil.

I would avoid the Miracle 2000, who knows what they could have added in there.

I would just recommend searching for as many whole, unrefined, unprocessed foods as possible.

As you know, I can't tolerate sugars, caffeine, alcohol and nuts. Maybe on occasion, but not daily. Its not due to starch, its due to my Candida, which causes many of the pains associate with AS, spinal arthritis, mostly in the upper back, shoulders and neck for me, and even my feet.

I have found two beverages I can enjoy besides water, because I know how boring that can get.

A pear and parsley smoothie. Just blend a fresh ripe pear with a very large handful of fresh parsley (which is like taking a multi-vitamin, so there's your supplement replacement), and some cold water or a few ice cubes. It's very naturally sweetened and refreshing.

A cucumber, celery and red grape smoothies. Just blend a cumumber, a large celery stalk and lots of grapes, two handfuls will make it nice a sweet. And some chilled water and a few ice cubes. I like to be able to drink mine WITHOUT a straw, so I don't make them too thick, by just adding more water as needed.

These beverages are detoxing and delicious, so I recommend adding them to your list. Especially since you are taking the meds, which are toxic for our bodies.

It's very important to eat the sauerkraut with each meal as well.

Hope you can figure this out eventually, don't give up yet.

Thank you Jeanne! I'll keep all those tips in mind as I search out foods for my husband. I'm not certain how to tell if there is a candida aspect to his condition. Can you point me in the right direction for figuring that out?

We won't be able to do the pear smoothie, as pears have been testing starchy here. But the other one might work.

Thanks so much!
Cynthia

Cynthia, Has your husband tried Sulphsalazine (azulfadine) along with the diet?
George