Kickas.org Forums Treatments, Drugs and Alternatives NSD and diet-related; As good as it gets?

My husband has been recently showing some improvement on the NSD and I was wondering if this is as much help that the diet can bring or will it be a good idea to try Dragon’s antibiotic protocol?

My husband has been on the NSD since November and with no real benefits until three weeks ago. This was when he also cut out yoghurt (which was the only dairy product he was eating) and has felt quite a bit better since then. He went from spending all day in bed to half the day, as the all over muscle stiffness was reduced. I was then very surprised when his blood test showed an increased ESR (108) and a lower CRP (74) even though he was feeling better.

I really want my husband to give the antibiotic protocol ago, but he is reluctant as he doesn’t think he could handle the pain of being without the Voltaren (as I understand he should stop taking them to see the effects of the fast and to stop further tummy damage). Therefore I would only continue to ‘encourage’ him to give it a try if its worth it. Or does that fact that he has shown improvement before taking antibiotics show that he should just continue as he is going with just NSD?

Interestingly my husband has no fusion but just feet problems, his Rheumy thinks that his high inflammation levels are caused by the inflammation in his feet. He is on a waiting list to have surgery on both his Posterior Tibial Tendons- and the Rheumy thinks that will fix the other pains he is having all over the rest of his body.

Thank you all for your time in supporting us this far, I hope as soon as I have some more time that I will be able to stop being taking and start giving some encouragement back. A

Take care,
Emily

I'm glad to hear there is some improvement! As I see it right now, a little is better than none! Although I DO realize that at the level of pain we are used to its very difficult to deal with a little! Its weird going from a normal functioning human to an almost lifeless being! My mom, whom also deals with this disease always says she is going to beat this rather than it beat her! Funny but I think that kind of attitude can help us all! I don't know what its like for the ones who live with us but I can imagine its very difficult! Thank you for your continued help with your husband! You deserve a lot of kudos! Support is all we can hope for! It goes a long way! I feel like without everyone around us supporting us it would be hard to strive to be better people! I hope for continued better health for your husband! I myself spoke with my pcp today about nsd and lsd due to severe ibs and vomiting with blood and he said that the voltaren is SOOO hard on our bellies. But everything has its side effects we just have to choose what we want and can deal with! SUCKS! I asked him which is worse and to no avail he couldn't tell me one over the other! In a perfect world... If you don't mind me asking is he on mtx? For now I am trying to get off voltaren! I feel better tummy wise but pains for sure have a huge increase! Thank god for percacet I am also trying a lsd but minimally because I have diabetes but its worth a go! My mom has had much luck with the lsd! Nsd to my understanding can be slightly dangerous though! Good luck and keep us informed! Don't worry about giving advise or anything like that! Sometimes just getting info from others on here is great cuz we can all go through and read it! But any helpful info... Don't hold back we can all use it

Hi Emily and Zanni,

If you are wanting to stay on an anti-inflammatory (NSAID), please at least try to change to a Cox2-inhibitor like Celebrex,(which is less harsh on the gastric lining) and take something to protect your stomach AS WELL as making sure that your NSAID pills are ALWAYS taken with a meal which contains a significant amount of protein and/or fat, to give maximum protection from the ravages of the NSAIDs.

Zanni - with the help of a dietitian, you should be able to manage to make your diet as LSD as possible.

I was wondering what sort of "dangers" you are talking about with a NSD? The human body is well adapted to undergo ketotic (non carbohydrate) metabolism, so if we are otherwise in good general health(apart from being invaded by the Spondy Monster...), I don't see what dangers there would be.

Anybody with a family history of kidney disease would have to do it with the guidance of their physician (i.e.: having your renal function assessed before relying on protein as the primary source of energy-giving food)

Keep trying to battle the Monster into submission, whatever it takes!!!

Hi Emily,

It does seem it's taking your hubby a long time to respond to the diet. He may be one of the more sensitive ones like my Jon who really need to be super strict. Jon once flared up off a cup chai tea I made for him... due to the cinnimon and other spices in it!

For these super-sensitive blokes iodine testing is a must to weed out hidden starches in places you may not have thought of. Even if the ingredients on a sauce bottle or something look OK... still test it.

Jon tried the roadback foundation antibiotic protocol on www.roadback.org. He took 100mg doxycycline once a day on Mondays, Wednesdays and Fridays. The idea is to use low "pulsed" doses like this to stop the bugs becoming resistant to the antibiotics. And also to reduce the Herx-heimer effect that can happen when you take antibiotics due to massive die-off. Anyway, the doxy really helped Jon heaps.

However, because he was feeling so great he started pigging out on chocolate a lot and on lots of other sugary treats. He also was not taking a probiotic despite my best efforts to get him to take one. This led to a bad candida problem and he had to drop the antibiotics after 3 months.

To get rid of the candida took 9 months of a terribly restrictive diet (and you thought NSD was restrictive?! HA!) with absolutely NO sugar like not even fruit! It was a nightmare.

So if you're going to go down the antibiotic route, please be careful. Limit refined white sugar (preferably cut it out) and dont gorge out on fruit too much. Take a probiotic or make your own fermented sauercraut. Hopefully this will help keep the good and bad bacteria balanced. The good bacteria "eat" candida in the gut. If they are all killed off then that leaves space for the candida to flourish. It puts down roots that can perforate and/or damage the intestinal linining thereby making the whole leaky gut thing worse.


I hope he feels some improvement soon
Chelsea

PS: I hope little Matthew is doing well

i think you hit the spot when you eliminated curd. one of my doctors told me to avoid it too, i just posted in a different thread.

Hi, Emily:

I just posted about dairy; it can have a dramatic effect upon some of us although it is not usually considered as a part of NSD--the target germ is a lactose fermenter.

Other things like additives (guar gum and maltodextrin are big offenders) and caramel can be AS-provocative.

Of course I'm going to tell You to encourage your husband toward some AP while he has the opportunity to avoid fusion and has been steadily turning back the clock on his AS.

It is also important to understand it is in our nature to rebel against the diet, even consciously; it is so unfair! So we know it works, but don't always do what is best for ourselves and this is the most common dilemma in people without much damage or who have not experienced iritis and kidney stones due to AS. Some will think that NSAIDs control the pain enough, but in reality the damage is progressing and disease momentum is snowballing and stopping AS LATER than sooner is like trying to stop a freight train.

Good luck with him, and Thanks so much for watching out for one of our own,
John

Hi John,

I was wondering if you have had the problems with candida that kiwi's husband Jon had?

Laurie

Thank you for your reply and your advice on avoiding the additives etc. It is because of KA that I have hope for my husband and that his now is improving. Thank you for encouraging me to continue to encourage my husband. I prefer the word ‘encourage’ as I know I’m a relentless nag when it comes to the NSD and the AP. I think he sometimes is scared to answer me when I ask how he is feeling as he knows I will then analyse what could be the cause of feeling good or bad. I just cant help but get very excited when I feel we are finally getting somewhere. I know I don’t feel any of his pain and I will never pretend to know what he is going through but I really hope he continues with this. My husband has a ton of will power and courage but it’s hard for him to trust me when he has Rheumy specialist telling him the opposite.
Thanks again for all your help.

Thank you for taking the time to reply. You are right, any improvement is fantastic and I’m so grateful. I know my husband has a high pain threshold (from other surgeries he has had and not asked for pain killers etc) so I know when he said he hurts- he really hurts. I cant possibly imagine how difficult it is to be in your position. I wish I knew more about the relationship of the NSD & diabetes but I know nothing sorry. As far as MTX, my husband was on that for a few months, it provided him no benefits at all. He said he felt awful all the time. He also had a persistent cough and blocked ears which left as soon as he stopped taking MTX. The Rhuemy didn’t agree with me tho. You are so brave stopping your NSAIDS, ive seen how my husband is when he misses just one dose- he can hardly move. I wish you all the best, thanks again.

Emily