Kickas.org Forums Treatments, Drugs and Alternatives NSD and diet-related; Not working

My doctor recommended that I use that formula. I didn't really delve into why. We had a good chuckle about it though. I joked that he was trying to use regression therapy on my intestines. =P

I wish I would have read this earlier, since I just saw him today. I'll ask his opinion next time I'm in there.

Take care.

Cody.

Where yo on any meds when you went through your detox?

Thanks
Chris
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I was doing my best not to take any pharmaceuticals at that point. The "heaviest" thing I let myself take at that point was Aleve. Since chronic naprosyn use was one of the things that forced me to detox I did my best not to take anything.

I refused to go on anything more than prescription-strength naprosyn. My MD said it would help treat the symptoms. I didn't want the symptoms treated. I wanted the disease treated. =P

I was taking some supplements when I was in detox. Here's what I was taking as best I can remember.

2 scoops Ultra Clear Sustain (Metagenics) twice a day. - Main component of detox.

2 KMG+ (Seroyal/Genestra Brand) three times a day. - AS leaches minerals. KMG+ is capsulated Potassium and Magnesium.

2 SuperOXI (Seroyal/Genestra) twice a day - Antioxidants.

1 GLY Glyco Formula (Seroyal/Genestra) twice a day. - Specially formulated multivitamin. Helped with stress hormone issues I was having in relation to coping with work and that monster at the same time. I was having major cortisol problems. God AS sucks.

Approx 1600 mg Malic Acid a day, spread out in three doses. - Helped with fatigue. Addressed some Krebs cycle issues I was having.


I think that's all I was taking at that time. The other things I've listed in another post were taken at other times. After my main detox I switched from Ultra Clear Sustain to Ultra Clear Plus and Endefen (both Metagenics) and lowered dosage. This helped maintain balance down there. I no longer take either.

Might be more info than you were looking for, but I just wanted to make sure I answered your question fully by letting you know what I was taking when I went through my first detox.

Take Care.

Cody.

Hi Bleen, are you HLAB27 positive? George

Hi George

Yep, I am HLA-B27 positive, for my sins!

I know I said no more whining from me but I really am going from bad to worse at the moment, despite following the NSD diet strictly (I bought the Sinclair book and have stuck to the letter of it). I'm actually finding the extremely sudden deterioration in my mobility and the level of pain quite frightening. I still haven't tried giving up dairy as well, and not sure I have the will to just yet as I've big exams looming in three weeks. I might try after that, but since this doesn't seem to be working anyway...

I also find information really confusing. For example, Sinclair says that there is NEVER any problem with melon or green grapes (red ones, she says, sometimes have starch in their skins), so I've been eating a lot of melons and grapes, and lots of other starch-tested fruit. But then, over the last few days I have read posts saying that fruit should also be avoided in the early days of the diet. This in turn seems to contradict the whole notion of beginning the NSD with a diet of apples.

Having experienced no relief or lessening of symptoms at all when I was on the apple diet, I'm not sure food elimination is necessarily the right way to go for me. I really wish the diet had worked, even a little, as I am so wary about the various medications available and some of the histories on here were extremely encouraging, as was your own. But unfortunately, it just does not seem to be working for me.

Given that I am fairly 'stressed' at the mo with revision, and that the weather is absolutely terrible (cold and wet), to give the diet a fair hearing I'll probably stick with it for a week or so after my exams, but I'm really not particularly hopeful!

Not sure what dairy you are partaking of, but it sets me off big time. Can do hard cheeses in very small moderation. Only thing I can have without too much worry if yogurt with lives cultures.

I would notice no benefit from NSD if I did not eliminate dairy in my personal experience.

Tim

Hope is only a post away with KickAS.

Hi Bleen, Sorry I dropped off after my first HLAB27 question, but I have been travelling. Can I ask what age you are and what meds you are on. Also whilst you were on the diet what meds you were taking? Incidently I hope you are feeling better. George

Hiya George

Hope the travels were fun rather than work!

I'm 28, have been diagnosed for about five years and have had recognisable symptoms since I was in a car crash back in 1996. Up until about two months ago, I had been med-free for about three years, not because I was pain free (quite the contrary), but because I had a really bad episode with my stomach and was basically too afraid to go back on meds (even paracetamol). I then was prescribed Accutane / Ro-Accutane for my acne which coincided with / caused a massive flair like I had never experienced before (it left me literally almost unable to walk and I was having spasms in my back every few minutes). I came off that medication after 10 days, and started the apple diet followed by the NSD the day after. Although the hip pain has now abated slightly, the back pain is still there with a vengeance. Alongside the NSD, I have gone back on Celebrex, but really only take one every couple of days. This is mainly 'cos I'm out of the habit, but I also have a bit of trouble with taking them in the morning: I don't have time to cook, and can't face much in the mornings (have never been a real breakfast person), so I've replaced my bowl of cereal / slices of toast with a slice of melon or other fruit: trouble is I don't think that really lines the stomach adequately for Celebrex...

I'm on no other meds, though have started (starch free) supplements (Vits and calcium, etc) on the recommendation of people on this site.

I haven't actually come off the NSD yet, which means I've been on it for about four weeks. I have been doing it strictly, starch-testing everything, and for the last two weeks I have also been dairy-free except for hard cheese, icecream and chocolate (so I guess that's not really dairy free!!). I haven't experienced any relief and my IBS has started up again since I have been on the diet and things like almonds, raisins, etc, which are supposed to be good on the NSD really seem to mess up my stomach, strangely. I'm also unhappy about the increased number of eggs in my diet as I've unbelievably had salmonella twice (!!), so I have a bit of an 'uneasy' relationship with them... I know I don't have to eat more eggs, but they are a cheap and filling alternative to meat / fish.

Thanks for taking an interest. As I said in my last post, I realise that given the circumstances under which I started the NSD, and am continuing it, it was a bit of a tall order to expect it to work miracles, hence my reasons for sticking with it for the time being, but I think I will be going on the Humira as soon as the hospital approves it (I perhaps stupidly decided to refuse Enbrel... if I'm going to go on such a strong drug, I may as well go on the one I perceive--for right or wrong--as the best or the one that will inconvenience me the least...). It unfortunately doesn't look like I'm going to be an NSD success story.

Hi bleem, I don't know much about IBS.. What foods are supposed to exacerbate it? Fats? Dairy? Fibre?

cheers,
z

"To live by medicine is to live horribly." - Carl Linnaeus, 1707-78

Hi, Bleen:

It is good that you are hanging in there to see whether the NSD will work for you, long-term. In most cases when it has failed even after a couple of months, there are complicating factors like candidiasis. I sometimes take treatment for this because I use antibiotics and want to avoid an overgrowth. Perhaps the addition of coconut (for the caprylic acid) meat and some Stonyfield Farms yoghurt would help things along.

Salmonellosis? THAT is bad luck for ASers, and means that you really could have some severe and lasting lesions. I would be so paranoid as to soak the eggs in some mild bleach solution--then rinsing--before breaking the shells; I am very careful to keep shell bits out of contact with the egg liquid. Ebringer's evaluations for his LSD took nine months, but the NSD should really show results in much less time--but in some cases over a month is not unusual. I cheated by using antibiotics, but continued to improve (attributed to diet) for over a year.

If you show elevated ESR during a flare, you might be able to monitor your progress in this less-subjective way. Many of his patients showed a twenty point drop in ESR, but would still have been in quite a lot of pain, starting from very high numbers in the first place.

Carol Sinclair uses almond flour in cooking and never mentioned it set off her IBS. Could your symptoms be ulcer-related, perhaps? I often had a hard and bloated stomach from eating many things (especially raw, but milk products were murder), after I had developed ulcers due to using NSAIDs.

Have you been taking a couple of spoonfuls of cod liver oil daily? I find this and other EFAs help very much, but borage seed oil (about 600mg) last thing before retiring helps very much with inflammation.

The Humira might be a good choice, and if you began it from a situation of low-IgA, it might work very rapidly for you.

Hope you will keep us posted and keep trying--sometimes this diet takes extra time and effort; I can still hardly get by on the NSD alone...without taking antibiotics. I hope that you are not in the same category, but I will gladly send you my own protocol, if you are interested.

Best to You,
John


"Ah but if somehow you could pack up your sorrows, and give them all to me--
You would lose them, but I know how to use them; give them all to me""
Pack Up Your Sorrows Richard Fariña and Pauline Marden

Hi John

Thanks for your response and your well wishes. They thought I had Crohn's there a while back, so I have had ALL the lovely and pleasant stomach tests done, and they didn't find anything, and said it's 'just' IBS, so seemingly no ulcers or the like (just as an aside, they also tested for Coeliac Disease as I am Irish. I didn't know this at all, but a crazy amount of Irish people apparently suffer from it: one in four the doctors said, which is mad! Though I must say I only know one person with it).

Do you know what... I'm not exactly clear on what the 'antibiotics' that you and others talk about in relation to AS are... is this the 3% hydrogen peroxide mixture or something else?

Unfortunately, no Stonyfields Yogurt this side of the pond (I have yet to find a starch free yogurt in the supermarkets or the few health food shops I've tried) and also many of the probiotics recommended on here don't have European suppliers, but I'm looking into the whole probiotic thing so hopefully should come up with something.

I'm taking Omega 3 fatty acids (non-fish based) at the moment, three a day, including just before bed. I used to take cod liver oil, but saw that my capsules contained starch. I'm also a bit mixed about taking it these days: first there's the environmental argument that cod should be a no-no due to overfishing (I have to admit I'm not massively green, but I do try with some things) and then there's the health argument: there was a big scare there a while back about the level of toxins in salmon and other fish, especially those that were farm bred, and if the flesh contains toxins, the internal organs are sure to even more... I read a little bit about it, and then of course, there came the counterclaim that everything was fine and the fish is ok, but you just don't know what to believe these days...