looks like you have been quite diligent. The reason I suggested in the last thread that it would be a good idea to try antibiotics or "Oxygen Therapy" is that it should have made it clear for you as to whether your inflammation is caused by gut bacteria or not...

Another method would be a fast, not an apple fast but a true fast without any food at all. A few months back after eating something off, I had pretty bad diarrhoea. Well to cut a long story short, my gut was cleaned out completely and I decided this was a good time to do a fast. I drank heaps and heaps of water and was pain free in a very short period of time. So next time I will probably start a fast with some laxatives. Every time I got hungry I just drank about 2 or 3 cups of water all at once and that seemed to quiet the hunger pretty effectively. The only thing you need for a fast is lots and lots of water, and a very tiny amount of honey every now and then.

If a fast works then you will at least know that the source of your inflammation is with food or gut bacteria..

just a thought,
z

"So long and thanks for all the fish" - Hitch Hikers Guide To The Galaxy

>> I have friends who have done the Atkins diet (not the same, I know, but still, no
>> carbs, more meat, eggs, etc) who claim that it really messed up their stomachs,
>> and that they are still suffering the consequences a couple of years later...

Hi bleen,
well... as you know the NSD doesn't have to be anything like the attkins diet. You could for instance follow NSD and still follow a high-carb and low-protein / low-fat diet. You could do that simply by sticking to fruit and vegetables and eating less meat, its up to you.

"So long and thanks for all the fish" - Hitch Hikers Guide To The Galaxy

The negative experiences I have had with Lactic acid have all had to do with an imbalance in my Krebs Cycle. My primary tools for bringing things into balance there were Malic Acid, magnesium, and potassium. Once I had that back in balance I had no issues with lactic acid.

Klebsiella is no way "healthy flora", as I'm sure everyone knows. Replacing the klebsiella with healthy bacteria was a high priority for me.

Antibiotics may be a short term solution. I was looking for something more precise and less like the "napalm" approach that course of antibiotics would provide.

The Probiotic blend that I've found to work best for me these days is Udo's Choice "Infant's Blend Probiotic". Here are the ingredients in this blend.

Lactobacillus casei: 35%
Streptococcus thermophilus: 20%
Bifidobacterium infantis: 15%
Lactobacillus acidophilus: 15%
Bifidobacterium bifidum: 5%
Bifidobacterium breve: 5%
Lactobacillus bulgaricus: 5%

In a base of: maltodextrin and ascorbic acid

(Note - Maltodextrin is a type of starch and could conceivably cause a flare if you're uber-sensitive. I personally haven't had any flares while using this product.)

I typically take a tablespoon twice a day when I'm using it.

As I mentioned earlier, I primarily used Ultra Clear Plus and Endefen in my early stages of clearing my AS. These two products helped promote healthy flora and acted as powerful detoxifiers.

My initial detox made me so sick that I thought I was going to die. It took about 5 days for the detox to get front-loaded. Once it got rolling I was greatly weakened for the next 5 days. I then started to feel better as I continued the detox. After a total of about three weeks I decreased my dosages and continued to take both products on a daily basis for a number of months.

This was a very important step for me for a few reasons. First, it gave me a safe source of nutrients. I didn't have to eat as much food (which could have been suspect) since the powder was quite filling. It also helped to heal my digestive tract and promote healthy flora.

I wish I would have kept a diary of everything I did these past few years. It would be a lot easier for me to write this stuff down now. =)

Take Care.

Cody.

Cody,
I am considering taking Udo's Choice "Advanced Adult Probiotic", and I wondered why you chose the infant's formula? Did a physician recommend it specifically for your case? I have been taking Natren's Healthy Trinity off and on for over two years, with good results, however, it is limited to just three species of good bacteria (L. acidophilus, L. bulgaricus, and Bifidobacterium bifidum). I am looking to increase the diversity of good bacteria in my gut. Especially, to add Bifidobacterium longum, which is reputed to be a good human symbiont with the ability to stay in the gut after probiotics are no longer taken. Curious as to your view point on this.
Jan

Jan,
Maybe the article in the thread below may shine a light on this as the infant type bifidobacteria seem to trigger less pro inflammatory cytokine production and more anti anti inflammatory cytokine production.
:
cytokines
Gerard

"Tell me what kind of food you eat, and I will tell you what kind of man you are."
-Anthelme Brillat Savarin -

Font errors, but reads OK

Ted

I've got Crohn’s disease...
...and he's got mine...
Spike Milligan

Heya,
Good to see you Ted !!. Thanks for the article I'll print it out. I'll be getting an interesting little library this way though strongly biassed of course.
Gerard

"Tell me what kind of food you eat, and I will tell you what kind of man you are."
-Anthelme Brillat Savarin -

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

Thanks
Chris

nope, none at all. literally, just filtered water and only about four apples max per day, all tested for starch. I didn't take any supplements during that time either. I hadn't been on any meds for a good couple of years before the diet, though have recently started popping celebrex every now and then when the pain is too much.

Thank you Gerard,
I will get the paper for that abstract. I am not sure, but I think in my case it would be wise to stimulate my gut immune system. I have almost no sIGa, for example. Can't do food allergy tests with gut IG, because I have so little sIGa, that the tests are all negative--my gut immune system can't mount a response. I don't have AS, or RA, although I have lots of Pm but (apparently) not the DR1 or DR4 genetic predisposition to RA. Maybe stimulating my gut immune system will help reduce Pm counts. Or maybe, taking the Advanced Adult Formula will just make me sick (again)!
Jan

Hi Jan,
Ted was so kind to attach the full article with his post. Click on "attachment" below his name. If this article is correct it is indeed true that we should try one of the two strategies to fight against gram negatives that are our problem (Klebsiella in case of AS P Mirabilis for you). The adult type will help the body fight the gram negatives but can cause inflammation of the intestines when the body reacts too much. The infant types will downregulate the inflammation but can cause Klebsiella or Proteus to invade even further. Looks a bit like a catch 22 situation to me but maybe if we choose the right one in the right situation we can make some progress.
Gerard

"Tell me what kind of food you eat, and I will tell you what kind of man you are."
-Anthelme Brillat Savarin -

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
----------------------------------------

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