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Sustainable Living

About Asphyxia

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    The Grimstones is a gothic fairytale about a girl who can read dreams, a baby boy with three legs, a mother who sew garments lined with warmth and joy, and a grandfather who heals people with his magical concoctions. I created The Grimstones as a marionette performance, and now it's a book series too.

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    If you feel a cold or flu coming on, eat a whole clove of raw garlic, three times a day - it works miracles.

« Riot for Austerity Update | Main | The perfect veggie garden »

16 October 2012

Comments

Hi,
A couple of years ago my partner came back frrom Brisbane with the 'flu, which I promptly caught. Shortly after getting over it we both developed shoulder pains, that migrated down our arms into our hands and later into our knees. The doc diagnosed it as arthritis and various drugs were prescribed. AS was never mentioned. Must look into this.
Someone mentioned going off potatoes, but that hasn't been successful for us. We like spuds too much, and bread and pasta and...... HHHMMMM

I like your blog and Grassroots articles and art. Remind me of my daughter up in Cairns. I'm in Tassie.

Good morning Asphyxia! Finally commenting here after lurking for so long. Thanks for the info in this post. I will be following it up for sure.

take care

Lynda from Brisbane

Great to hear you are finding some help with your new diet. I like the way you have synthesized all the information and provided it here. Maybe someone else with AS will find help through your blog. Good on you! xL

Thanks Laura and Lynda.. :)

Kurt, I know what you mean - dietary changes are seriously HARD.. but it does get easier with time as your body adjusts to new foods. AS usually starts with a very very stiff lower back - I don't know if it can begin in the shoulders or not. It seems every kind of arthritis has its own cause and treatment - apparently people with rheumatoid arthritis don't respond to the low starch diet. It'd be well worth getting a bit more info from your dr about what kind of arthritis it is, and following up with some searches of your own, especially medical journals and published papers, because then you can find out for yourself what research has been done on your kind of arthritis, and what forms of treatment are likely to help. Also you could try no starch or lactose for a week (eat meat, eggs, and non starchy veg), and see if that helps. A week would be long enough to indicate whether you are on the right track.

Cheers,
Asphyxia

Hi Asphyxia,
I love reading your blog posts- I always learn so much and appreciate the immense amount of research that has gone into many of them. You have a real talent for processing and synthesising information, then presenting it to the rest of us in a very readable form.
Thank you, Caro

Wow, what a roller coaster of emotions this whole experience must have been! Hats off to you for taking it all in stride and getting to the real research needed to manage it. I hope other AS sufferers in Oz (or anywhere) find this page.

Also I just followed your traditional foods link and saved your Food Flower to print out, thanks :)

i also changed my diet with alot of fresh juices with flax seed oil and have found within the past 3 months my pain levels and imflamation in the joints have reduced.

That's great Jen.. I too have been trying fresh juices, and even before I discovered the starch-connection with AS, I noticed that the juices seemed to mean less pain the next day. Do you have AS as well? Or what kind of arthritis?

There is an alternative form of treatment for the so called auto immune arthritic diseases, including AS, based on the fact that these diseases are set off by an internal allergic reaction caused by the presence of proteins made by infective micro organisms. The treatments are various antibiotics. Dr. John McPherson Brown, M.D. treated over ten thousand patients in his lifetime with high rates of stabilization and remission. The dogma of standard medical industry has denied that this is the reality for seventy years. Search for The Way Back Foundation and the book The New Arthritis Breakthrough to learn more.

Thanks John, I've just looked into it. It's actually The Road Back Foundation, and the Dr is Dr Thomas McPherson Brown. I am interested in antibiotic therapy, but I find it hard to believe it is safe for my body to be on low dose antibiotics indefinitely. I'm now looking into natural methods of killing the klebsiella and plan to try lactoferrin, and possible uva ursi and/or oregano oil.

My husband and I both have AS. He also has Chron's and is positive for the HLA-B27. He has bacterial overgrowth in his small intestines. We've lived in Brazil for 22 years, doing mission work. Every few years, we come to the states. The food in the states is what tears my husband up. I think it's all the preservatives in the food. I love your blog! It has been so helpful to understand more about AS. I don't have intestinal problems or skin problems, but I do have the arthritis in my spine along with Fibromyalgia. I'm taking Humira which keeps the pain away, but also destroys my immune system. Do you know of herbal treatments that address the pain associated with AS?

Thank you, Dana

Hi Dana,

It's great to hear from someone else with AS. I have discovered that Crohns and AS often go hand in hand - I think the Crohns is caused by the AS. I don't know a lot about herbal treatments specifically for pain, but I have just recently been taking Lactoferrin, which suppresses the klebsiella bacteria that causes my symptoms. By taking this in conjunction with the starch-free lactose-free diet, I have been experiencing quite a bit of relief. But it's not a pain killer - it addresses the cause. You could contact the company called Australia's Own - they are developing a new product called Pain Go which they say is all natural. I'll be interested to hear what you think of it.

Cheers,
Asphyxia

This is so helpful.. keep on being awesome! My boyfriend is in his twenties and suffers from severe AS. Some days he will get irritated and angry with me, at first I did not understand why. When I would ask if he wanted to go for a jog or to the movies he would get this look in his face. It is because he is constantly in pain. Sitting at the movies hurts his back, standing hurts his back, walking, sleeping etc. Some days are better than others. I began researching Ankylosing Spondylitis with hopes to find something that can help. It was hard for me to understand what daily life is like for him. I will never fully understand how it feels to have AS, but I am glad to say this has helped me get a little closer.
Merci,
Chase

Hi Chase,
I'm so glad this helps. Alan Erbringer, who did the research into AS, described it as "a miserable disease". He got it in one. I'm so sorry your boyfriend has to put up with it. He's lucky to have you being understanding and looking into it for him.
All the best,
Asphyxia

AS is really miserable, dulls the eye we kind od live in this body but not brisk, just lie there in this body observing, it sucks by the way iam only 30 years age, friends of my age eat ecerything and are enjoying here iam with bad fate

I'm an AS sufferer myself. Like you, I don't like drugs and try to deal with it day by day. Its frustrating that others think you are slow or lazy, but I am not, I have to move a certain way to avoid pain. I hate AS. Sometimes I give my body a rest and fast with just water and that seems to help out some. It seems like starch is in almost all foods. I miss the times when I didn't experience pain, during my teen years. If I had a choice to either get a million dollars or completely eradicate my AS from my body, I would pick getting rid of AS in a New York minute.

Everyone who has AS, I'm sorry you have this disease like me. I would not wish this on my worst enemy.

Travis, thank you for leaving my comment, and I'm sorry you have to put up with this hideous disease. Yes, it's foul, isn't it? I agree, starch seems to be in almost all foods which is very restrictive. Do you try to avoid starch too or is it just too hard?
Asphyxia

Hi there! I have been battling AS since before I was diagnosed 8 years ago. I have been taking Arthrotec ever since, which really helps, but in the past few years has probably been a huge factor in why I have a lot of bowel inflamation which comes with a lot of blood. Therefore, now I really want to fix this naturally. Your blog is helpful and inspiring. I've known for a while that starches are bad but still continue to eat them but now that I've read this, I'm motivated to do this properly. I found it funny at the end of your blog when I found out you're Australian. Here's why: I'm from Vancouver, Canada and the one thing that has worked for me in helping my AS was actually living in Australia for a year and a half! I found the warmer climate and the more relaxed atmosphere really helped. I even did a lot of intense boot camp style training 3 or 4 times a week which also helped. I drank far too much but still stayed relatively pain free. Here on the other hand, especially during the winter, I have a hard time getting out of bed or standing up or walking.
Anyway, thanks for sharing your research and experience. I look forward to practicing the no starch thing and eliminating the drugs!!

What did you eat specifically. Also what vitamins and herbs (if any) did you take. My spouse may have this and I want to be pro-active and help achieve wellness through dietary changes. He is under a doctors care and is taking anti-inflammatory medicines, but nothing seems to ease his severe pain. He is unable to even walk (for the past 2 weeks) and I just hope you can offer any advice regarding natural remedies and fresh foods.
Thanks for your response,
Dana

Hi Dana,

I'm preparing a blog post now about what I eat but it will probably be a couple of weeks before it goes live. So in the meantime, broadly, I omit all grains, beans, peas, lentils, potato, sweet potato, beetroot, parsnip, garlic, pepper and spices. I omit dairy except for butter, and some yoghurt that's been fermented for 24 hours - look up SCD yoghurt for how to do that. I eat blanched almonds - a handful twice a day - meat, fish, eggs, pumpkin, carrot, broccoli, leafy greens, cabbage, onions, mushrooms, tomatoes and capsicum. I make sure to have plenty of butter or olive oil or coconut fat or animal fat with each meal to give me energy. I hope that helps your boyfriend - let me know how yo go.

Cheers,
Asphyxia

Jason, aint that funny that your symptoms are less here down under? I notice exercise makes a HUGE difference to my symptoms so maybe it's the boot camp you did here! But others say the cold makes their worse.. I think it's pretty cold in Canada, yes? Great to hear you are inspired to focus on natural solutions to this.. let me know how you go and what you end up eating..
Cheers, Asphyxia

I've just been diagnosed with AS, after years of niggling symptoms that doctors could not explain. Finally a bout of eye inflammation provided the crucial clue ; it was the eye doctor who suggested it was my back that had caused my uveitis !
I've been doing a relatively gentle martial art called Yoseikan Aikido which has helped maintain movement, and I hear swimming is also excellent. For pain management and inflammation I have found ice packs actually did more than painkillers. BUT on nutrition ; I read recently that Zinc helps colds because it actually calms down the immune system and stops it over-reacting to infections. I wonder if anyone has tried significant Zinc supplementation with this in mind and has had any success ?- Mark

Hi Mark,

I"m so sorry to hear you have been diagnosed with AS. But it IS good to finally know what all the weird symptoms are about - it was a relief to me to finally understand. I have found NOTHING to be as good as having a weekly swim, and when I miss that, my back definitely tightens up in a way that stretching at home can't fix. Ice packs? Wow I'll have to try that. I haven't tried them. I haven't tried zinc either - I'd be interested to know how you go with that.

Cheers,
Asphyxia

Thank you for all your info! This was exactly what I was looking for. Keep it up!

Thank you so much for the clear easy to follow information that you have provided. It gives me hope that I can still lead an active life despite AS. The cold definitely aggravates my symptoms and I find yoga gives me relief and brings me back into my body.

Hello everyone,

I write you from Macedonia... My husband was diagnosed with AS four years ago.We have done a lot of researches through the Internet... My husband has tried with lots of things to get rid of pain. At first he started with medicines like Prednisone,Sulfasalazine and NSAIDs.
He didn't have much pain relieve and the blood tests showed that the ESR inflammation was very very high about 10 times higher than normal...
Than he found out about low starch diet... he says that he has some pain relieve but the blood tests still shows high level of ESR and CRP.
He has read a book from Russian Malahov the name of the book is "Starvation". He was on a starvation for 20 days and than he really felt pain relieve,the swelling from his knee was totally gone but when he started to eat again (even he doesn't eat starchy food and dairy) the pain come back again and inflammation is very high.
He started to go to a homeopath four months ago,and is treated with homeopathic remedies from Sannum Khlebeck (German remedies),for the last four months but he did again blood results and it was disappointing, the ESR level has increased on a level of 123 (normal level is from 2 to 12).

We are very disappointed ,we don't know what to try any more... one more disappointing thing is that in our country is very difficult to be given TNF (biologic injections). The patients with AS are treated only with Prednosine, NSAIDs, Sulfasalazine and Metotrexate.
Nothing from these remedies can decrease his inflammation.

I want to ask several questions about others condition:
What are your level of ESR (Sedimentation of erithrocites ) ?

My husband also has rash on his shoulders, arms,and chest, do you all have rush and is there anything that helps to get rid of it?
A month ago, some yellow-brown stains showed on his nails, does anyone else has something like that?

I will be grateful if you include me in the communication.

I also want to ask those who are on a low starch diet, what they think about peanuts,chickpeas,cornflakes and bananans are they allowed to be eaten,are they starchy?
Also what do you think about sugar is it a food for Klebsiella or sugar is allowed to be consumed?

Keep in touch,
Mila

Thank you so much for all of this insight. I am 26 years old and have been suffering from AS for about 10 years now, but i was formally diagnosed with it about 4 or 5 years ago. I receive remicade every 6 weeks for it, as well as an anti-inflammatory pill daily and pain pills daily as well, but i am so sick of the side effects of the two and frankly i don't really know if the remicade even helps with the disease at all. I have a lot of stretches and strengthening work i do on the side, and i am seriously considering battling this disease my own way, naturally. I was just wondering if anyone on here has received remicade for the disease and if it helps them, and if anyone has made a switch off of remicade and if they noticed any serious negative effects within months. I would love to get anyone's insight, I am just so sick of relying on doctors that really just don't help me in a way i thought they would. Thanks

Hi Chris, I'm afraid I've never tried remicade. I have had fairly good relief just through low starch low lactose diet, and exercise. I need to do a 20 minute stretching routine every morning, and make sure I go for a swim at least once or twice a week. That makes a huge difference for me.
Cheers,
Asphyxia

Hi Mila,

I have read that sugar IS allowed to be consumed but I think it gives me trouble so I don't eat it. I eat honey instead. I haven't tested sugar extensively though, mainly because I believe honey is healthier and I prefer it.

Peanuts, chickpeas, cornflakes and bananas are all too starchy for me.

I have a problem with rash on my hands.. it improved with my low starch diet but has only gone away after over a year on the diet. I suspct it will still return. But I notice it flares up if I eat starch or lactose, and takes well over a week or two to settle down again.

Perhaps your husband could try the starvation diet until his symptoms improve, and then try introducing just one food at a time to see which foods start up the problem. Maybe this way he can work out a diet with certain foods that don't give problems?

Best wishes,
Asphyxia

Interesting. I have recently been diagnosed with AS and I have it quite bad. I was very ill about two years ago with a very nasty flu type virus and was out of it for about two weeks. Now I know what happened. I have read that dietary change can improve things especially if you avoid plants in the nightshade family ie potatoes.

Still not confirmed that I have the gene (still waiting on blood tests), but at 48, and just the first signs of AS at the S1 joint, I put my lack of condition down to 3 main points, been taking Anti-Virals all my life, including Oregano Oil, MMS and Apple Cider Vinegar. So, I don't know about everyone else, but yes, the Low/No Starch Diet works, as well as a No Sugar Diet. I am 6 1 1/2" and about 92 kgs, and don't get much lower than that... for me, I am lucky that I have always been pretty active, and swim... but it is true, the couple of times a year my back is really sore, its time to rest for a few days.

Hi Richard, I read that too, about the nightshade family, but I have found the only vegetable in that category that affects me is potato - I have tested the others very carefully but they don't impact my arthritis.
Cheers,
Asphyxia

Hey thanks for the info. I have suffered from pain in my sacro joints for a few years and have found it hard to do sports, I went to the doctor about a 2 weeks ago and he told me I have the HLA-B27 gene so I am booked in to see a specialist doctor. My doctor has prescribed me anti-inflammatories and they work great, my pain has gone to about zero. I don't want to take them for life so I am looking into natural ways to help me with this. I watched a video a few months ago called the perfect human diet which I tried for about a week but felt like I had no energy and very hard to stick to this diet. I may try this starch free diet and work out a plan to get off the drugs. Thank you very much for the research you have done

My son 18 yrs diagnosed withAS. He is suffering with hip pain, but he is not aware of the disease and its prognosis. I have searched the web and learnt the hard realities of this dreaded disease. I am spending sleepless nights worried of his pain. My wife is not aware of the disease and feels that my son is lazy and non reactive and keeps shouting At him. Your blog is a light that's dispelled my darkness . My son will now have to move to hostel for studying engineering, really worried how he would mange.

Hi all,
Just recently diagnosed with AS after years of back pain, sciatica and stiffness, had spinal fusion L5 S1 4 years ago. I'm supposed to be meeting a nurse soon for edu on administering humira, 36 yrs old, 2 small children, I'm really nervous about having to take medication long-term, is cutting out starch working or is some med needed too? Anybody got any feedback on humira? Thanks a million, Orlagh

Sorry Orlagh, but I've never tried humira. I manage my condition purely with a low starch, low lactose diet, and I don't take any meds. I still have some stiffness and still need to exercise daily to manage it, but I no longer have the burning pain I did before I started the diet. Cheers, Asphyxia

Thanks for putting all that info in one place!!! I was diagnosed with AS about 12 years ago and have been coping with the pain with for most of the time drug free, but unsure of what other options I had. Being from the US, I've grown to not trust any doctors I've seen due to what seems like ignorance or lack of caring about patients well being. I've become sickened by the medical industry, literally. That being said, I've had to obviously change a lot about how I did almost everything. As the pain has spread to my upper back, shoulders, neck, chest and hips, I've had to limit myself a great deal. No more snowboarding or skateboarding. Running is rare. I don't even wanna mention what sneezing feels like. Ive done tons of my own research only to feel like whenever i think I'm on to something, i find something or somebody trying to discredit the information in one way or another. I read about klebsiella and how its a possible cause, but most of what i read told me the disease is genetic, so Im assuming that traces back to the b27 gene. Like I said, I don't trust a lot of what I've been told by doctors here in America. I'd like to think it's not like this everywhere. I believe they are practicing what they're taught because it is expected of them, even though it may be harmful to patients in the long run. It seems to be getting harder and harder for Americans to protect ourselves from out own government. And nobody seems to care. Which makes it extremely difficult to come across any worthy health information. All interested in plastic surgery and rapid weight loss surgery instead of nutrition and longevity. Wonder if they'll ever realize that with improved health and nutrition they probably wouldn't feel the need for such procedures. I will stop venting now... :) I thank you again and look forward to discovering more people like you and such vital info.

hi sir,for the last 1-2 months i m experiencing pain in the left hand fingers especially joints, also the tips if touched gives the feeling of numbness, the pain and the numbness aggravates after i get up in the morning or after rest, please advise, i m living in india aged 45 non vegetarian

Ajay, you need to go to a doctor to be diagnosed properly. I'm afraid I'm not a doctor and can't diagnose your condition.
Best wishes,
Asphyxia

Hi. Diagnosed with AS few months ago. Been doing starch free for few weeks with increase in energy levels but pain/inflame seems same. I am HLA B27 negative though. What do you know about the cause of AS if not from Klebsiella as in HLA B27 pos?? Any info appreciated

Hi There, I am from Pretoria, South Africa and was diagnosed with AS about 18 months ago after many years of back pains. About 2 years ago I experienced a severe pain in my left heal. My Orthopaedist basically made the diagnoses and referred me to a Rheumatologist. With only 5 Rheumatologists in our City, I had to wait almost 3 months to see the doctor. Luckily my GP started me off on Solazopyrine and Anti-inflammatory tables. Once I saw the Rheumatologist she changed the medication to higher doses and added some other medications also. Since then the medication was changed every three months, blood tests done and once I had an cortisone injection in the heal. For the last 4 months all has gone well – very little pain and discomfort. I am fairy active – doing my own house cleaning and laundry. But about two weeks ago I experience stiffness and since 2 days ago most of joints are swollen and very painful. I tried to minimize the starch intake, but it is not always possible. My husband and children are very supportive and assist were they can. At this point in time, I want to change over to more natural treatments, because I believe all these medications can’t be good for me and it costs a fortune. Therefore I decided to do some research on natural treatments and possibly homeopathic treatments. My son is also carrying the HLA B27 gene, but has no symptoms of the disease yet. Thank you so much for this blog! I would like to keep in touch and share ideas. Good luck with your research and let’s make difference!

Hi Carin,

I'm sorry to hear that you, too, have AS. I agree with your thoughts about natural treatment. Mine is going reasonably well so far but I still have some stiffness and MUST exercise in order to keep well. But overall that's working for me. Goodluck with getting off the meds.

Cheers,
Asphyxia

I have been fighting AS for 4 years now. I have tried the whole spectrum of traditional medications offered in the US and have suffered some of the side effects from the biological drugs ( fungal infection and lymphadenopathy ) . Scary to say the least. I am grateful for your blog because I feel now that diet and naturopathy is my only option. I am eager to try the low starch diet and read the research you mention. I have also been told that Oregano oil is very effective and a supplement called Zyflamend. I am currently finishing a post surgery treatment plan And unable to start these supplements for another week. Please share if you have had any experiences with these supplements. Your story is very ecouraging.

Hi T.Oliver, Great to hear you are planning to try natural treatments yet. No I haven't tried either of the treatments you mentioned, though I did look into oregano oil for a while as I too have heard it could be beneficial. In the end I couldn't find proof that it was more than an "old wives tale" and decided to try some other remedies first. But I'm very interested to know how you go with both of them and whether they help you. If they do I reckon I will try them too. Cheers, Asphyxia

Your article has perhaps been more informative than the 10 page booklet the rheumatologist gave me. It is devastating to be told you have AS, I know, I was only diagnosed in July after 3 years of suffering. I hate having to take 3 different types of drugs every day...it makes me feel sick to my stomach. Some days I don't think it's worth living. And so I have been fervently researching any sort of natural remedies that could help me. I have been taking a rose hip supplement (called GOPO here in the UK). While it is expensive it seems to be beneficial so far, so much so some days I feel like a half normal human being. Further to this I am going to try out coconut oil as I have heard good things about its anti bacterial and inflammatory properties. Not sure I could give up pizza, pasta and chips just yet!!! But will be trying to cut down after reading your article. I'm glad I found this. Thank you x

Gratitude for your dedication..when you refer to starch do mean gluten?

hi asphyxia,

i hope you must be doing great

i am also blessed with AS (ain't it a blessing?) in addition to Polycythemia :)

i belong to pakistan and despite many efforts i couldnt find any patient of polycythemia...is here anybody suffering from Polycythemia and AS?

i want to know if you use any specific something/anything like medic/food/suppliment etc. which helps relieving pain?

Shahid
tc

Hi Shahid, I'm afraid I have no experience with polycythemia. Best of luck, maybe someone else who reads this can help you? Cheers, Asphyxia

And Melinda, gluten is a starchy food, but there some food without gluten is still starchy. Starch refers to a particular type of molecular make up for the food, and that's distinct from gluten. Asphyxia

I am so grateful to find your blog. I was diagnosed with AS about a year ago, like you after a severe flu. I was also having issues with my Merina implant at the time and the doctors thought I was crazy. I seemed to have a lot of issues with what I ate, I just didn't want to eat at all. I had chest pains on and off, particularly if I drank coffee or ate chocolate.. I was having panic attacks, and an annoying irritation in my throat as well as reflux. So I ended up having a load of tests to check everything out and they all came back clear. (Which is great) But still i had no answer. I just had to perverse with my gut telling me it was all to do with what I was putting in my body. I got the Merina removed ASAP and I haven't had a panic attack since. But my chest aches still continued so I went back to the doctor pleading for some answer saying it felt like it was in my bones! Luckily my doctor straight away sent me for a blood test which tested positive for AS. Finally I had something to work with and understand, my hip and back pain over the years was also explained along with the inflammation on my sternum.
My mum has Bechets syndrome and I see what drugs she has taken for the last 20 years and really wanted to avoid heading down that track. I am allergic to aspirin and codeine so I wouldn't be able to take a lot of the drugs anyway..... That's why I too have relied on diet and exercise to help keep my body pain free. I eat primarily a healthy diet of fresh fruits and verges along with some lean meats, chicken and fish. I have given up tea coffee and most chocolates, wheat, gluten and have recently gone lactose free. i have found that it is just not worth the pain afterwards. It s extremely isolating at times, especially out socialising.
Thank you for your detailed research and I agree with you 100 % that diet makes an incredible amount of difference to your quality of life. Eating healthy, exercising and learning to listen to my body has helped me feel almost normal again. For me right now it's learning to rest... Not overdoing it and getting too rundown.

Hi Asphyxia

I have read with interest much of your blog...thanks to all who have contributed. I have had this disease for nearly 20 years (I'm 43), and have experienced perhaps 10 iritis 'attacks' (seems to be every second year if I'm lucky). Steroid drops are inavoidable in iritis attacks but I really dont like taking what doctors prescribe, NSAIDS.

I have had a great deal of success with low starch diets and I seem to get away with a normal (gluten free) diet ad hoc and go low starch when necessary. I am gluten free as my gut was a 'bit wobbly' there for a while and GF definitely settled this down.

I have recently been taking tumeric extract and coconut oil. The tumeric is a great anti inflamatory, and the coconut oil is a natural anti viral/anti bacterial product. It is always difficult to know exactly which products give the most benefit especially when there are multiple ailments going on.

I'd be interested if there are others who have tried tumeric extract...I also do yoga which helps my back big time!
Thanks
Taranaki Kiwi NZ

Hi Taranaki, great to hear you too have success with low starch / gluten free diet. I tried turmeric for a while but didn't notice a clear anti-inflammatory effect, despite all I've read about it. But you've inspired me to give it another go. Goodluck with your journey! Asphyxia

Thank you so much for all the info, saved me a lot of time to research.
I've been diagnosed this morning, still bit depressed but your article brings me hope.

All the best!

Hi,
My name is Pablo. I'm a 63 year old male and I have been diagnosed with undifferentiated ankylosing spondylitis. My symptoms are not severe but there's muscle and joint pain. The most difficult thing to deal with is the stress caused by the uncertainty of my future health... I eat a paleo diet and I've become even more strict with what I ingest. I suggest you look into ORGANIC SULFUR (commercially known as MSM) but make sure that you find the pure crystal form. It is really a miracle supplement! It will give you energy and lower inflammation. As for the stress and exercise I recommend yoga. Good luck!!!

Thanks Pablo, will be sure to check out organic sulfur.. :) Cheers, Asphyxia

I have had AS since I was 17. It's pretty bad the damage it's done. But I was maintaining it pretty well until about 2 years ago. Right now I'm waiting for my insurance to approve Remicaide infusions because it's moving into one of my eyes.

I've never heard of this research before, but I'm intrigues. Is there more specific directions for cutting things out of my diet? I want to know more.

Thank you,
Kate

Hi Kate,

I'm sorry to hear the AS has done so much damage to you. While you can't undo permanent damage, maybe you'll be able to prevent further damage from happening through diet. The actual diet needed is different for everyone as it depends on the strain of klebsiella you have, and also the bacteria tend to evolve depending on their environment. I think the best thing to do is experiment and see what works for you.

Cheers,
Asphyxia

I am so glad I found you.I have been researching to find something that tells me there is hope beyond meds. My 18 yr old son has been diagnosed with AS 3 months ago. He has suffered with pain for about 6 yrs but was always told it was muscle strain ,sciatica,etc. Although his rheumatologist wants him on Humira or Enbrel I am reluctant. He is so young and they have so many side effects. He is now seeing an alternative doctor who has just put him on some natural herbs and is eliminating certain foods from his diet. The rheumatologist told us that once any spine fusion occurs it cannot be undone. And the longer we wait to start the meds the greater chance of spine fusion. My concern is what if I am wasting precious time with the alternative, natural approach.I am not only looking to stop his pain, but I want to ensure that this method can also prevent any further damage to my son.Supposedly the Humira can prevent any further fusion of the spine.But it can cause other problems which we want to avoid. Any input that anyone can give me would be greatly appreciated. Thanks

Hi Asphyxia
I’m Kamal from India , Recently found out that I am HLAB27 + , Pain seems to be my best frnd now a days , Specially on sacroiliac joints . Sometimes the pain is so at its extreme that I can’t even walk or sit .But having said so I have not lost my hope that someday I will win over it .Following are the things which I do to fight against AS and is helping me a lot .

1. Low starch diet .
2. Drinking Lots of water .
3. Running / Walking .
4. Swimming .
5. Having Phyllanthus emblica fruit ( 3 times a Day ).
6. Yoga .
7. Nonsteroidal Anti-Inflammatory Drugs (NSAIDs) ,but in lower qty so that AS infection is arrested and do not spread .

HI Asphyxia,

Thank you so much for the blog. I was just diagnosed with AS. Positive with HLA B27 with L5 S1 diffusing and ESR of 44. I am a bit worried about this, since I am the only bread winner in the family. And by having this disease, will definitely put my family in a bigger problem than i am having now.

I was just wondering if you already posted the blog you mentioned to Dan last April 19 that you are planning to post. I would be so grateful if you can share this with all of us.

More power!!! And may GOD Bless you More!!!
POL

Hi Asphyxia!
Was feeling pretty miserable about the prospect of dealing with pain and taking drugs for the rest of my life as offered by the docs following my diagnosis with AS but then I came across your blog! To someone like me to whom healthy living is so important it's such a relief to find that solution might be within my own control and via diet not NSAIDs. Since reading about Alan Erbringer I have found plenty more supporting evidence out there. For anyone else out there dealing with AS then i found these websites useful: http://www.ankylosingspondylitisdiet.com/ and www.kickas.org. Am determined to manage this through diet and sport. Good luck everyone and thanks again A for giving me that first glimpse of hope and the will to seek my own answers.
Pascale.

I have suffered with a less intense case AS for a number of years, although not officially diagnosed until ten or so years ago. A rheumatologist prescribed an NSAID and buffer for the probable stomach issues caused by the NSAID.
I took that poison until I developed cardiovascular disease, at age 62, and wound up with a stent in what is commonly called the widow maker. Fortunately it was caught before any heart attack. I am of average weight and do not suffer from any other issues which might have caused the blockage. Subsequent readings confirmed that long term use of NSAIDS can indeed have those effects.
The doctors only solution was to "take them every other day" That's when I lost all hope with a medical solution, and went searching for something natural. I first found Turmeric to be a natural anti-inflammatory , then a supplement called CURAMED, which is higher in Curcumin, 750 mg which I now take twice a day. Reading further about a lower starch diet is hopeful. I also swim, and stretch.

hello
i'm akshay from india and m only 20 years old .. i hv been suffering from AS from the past 5-6 years .. m nt gtn better .. my condition is getting worse .. plzz can u help me with my diet ?? wt to eat and wat not to eat ?? i also dance so wanted to know should i stop dancing ?? plzz rply soon :)
thank you

Hi Akshay, I'm sorry to hear you have AS too. See the posts on my blog for what to eat and what not to eat - I don't know if they'll work for you but they have helped me. I'm not a doctor though so I can't tell you exactly what you should do! Also in my experience exercise is very beneficial, so dancing is probably a good thing!
Goodluck!
Asphyxia

Hi,
My symptoms appeared after having the Noro Virus while I was 8 months pregnant, 18 months ago. I was able to fix up the Chronic fatigue, tingling sensations at the end of fingers and lowered urine flow by home brew parsley tea. Boiling a clump of parsley in 2Litres water and storing in fridge until needed - the italian parsley is the easiest to find, especially if its gone up to seed. This you drink 500ml per day for one week, and then a cup per day as maintenance. My neck and shoulder pain was helped by deep tissue massage but has left an intermittant vibration mid neck. Bowan therapy moves stops this vibration for a few hours, but it always returns which is actually more frustrating than the constant subtle lower backpain associated with the condition. Magnesium tablet suplementation also helps with any insomnia and is another area which should be looked into with conditions, as the P:Ca:Mg ratio in foods are always way out of wack. Has anyone had the vibrating issue to deal with as well as the chronic pain? Ren

I have known about Klebsiella for many years but your comments light up a few dark places in my knowledge. I have been suffering with AS for much of mu adult life (I'm 66). About 20 years ago I did go on a long term low dose antibiotic to try to kill the klebsiella. This worked for some time but it did come back, although not at the time too severity. Now in the meantime I did go on a diet for another decease which included strictly no dairy. For years I had nearly no trouble at all with my AS. Over the last year I have gone gradually back to eating cheese occasionally and the odd bit of ice cream. My AS returned with a vengeance and hits me hard about once a month. I failed to identify that the dairy free diet was helping my AS. (Too much attention to my other decease). Interestingly I did not restrict carbs and have always eaten a lot of bread and pasta. This did not seem to affect me in respect of AS, but after reading your comments about Klebsiella I think I should go back to a diet free of dairy and see what happens. May get my GP to do the antibiotic thing again to kick start the process. Will report as I go.

Mel

It is a great help and guidance for the people suffering from AS. God Bless the Author

Hi Mel, I'm extremely interested to hear your experiences.. especially that the antibiotics helped you. I'm tempted to do that but am terrified of ruining my body's micro-organism balance. Hmm, it's a tricky one. How long did it take for the antibiotics to kill the klebsiella and hence for you to feel better? I'll be interested to hear how you go with starch-free as well as dairy-free. I've come to understand that everyone has their own strain of klebsiella bacteria that evolve over time depending on what you are eating etc.. so it's very possible for one person to be affected by a food but another person not to be.. it just depends on what their klebsiella like to eat. Anyway, please do let me know about the antibiotics - what dose, how long did you take them for, how long to start feeling better.. which antibiotic did you take? Thanks so much, Asphyxia

hi iam praveen,

i am HLA B-27 Positive patient. i know about this disease 7 year before. I started homeo pathic medicines. its very helpful to me. I am doing some exercises also. But some times very painful. Is there any treatment in allopathy.

hi i am milan, i am suffering this disease for past severall years and in 2011 i was so ill that i was completely bed return my bone got fused also and one day a friend of mine came to me and suggest taking nutritional supplement first i did not believe but thought why not take it after all i am having allopathy for years and did nothing very good,so i started taking it from amway nutrilite like omega3,glocosimine,co-enzime q10 and call mag after having this for two month or so i was able to gain internal strength,i could get up from bed go to toilet by myself and slowly i could do some exercise like stretching and now i can go to places i want.thanks to god got rid of that torturing pain.

Thanks Asphyxia for all your information...what a GREAT blog and what a gift you are to others with your research. I own a yoga studio and am a distributor of some pretty amazing pure therapeutic grade essential oils and wanted to share that there is a wealth of information out there about the successful use of essential oils with ankylosing spondylitis and klebsiella bacteria. I saw someone was inquiring above about using essential oils so i thought i would post some information on that. Here is a pdf with a study done by Jennifer Edinns, microbiologist, doing a study on the doTERRA Essential Oil ON GUARD blend where she researched the effects of this oil blend on MRSA (just in case some readers don't know what MRSA is...MRSA is a strain of staph bacteria that has become resistant to the antibiotics).

STUDY: http://www.doterra.com/tools/documents/SAB_Compendium.pdf

Anyway, if you or anyone else are interested in trying some of these oils I would love to send you a few samples. Please email me personallly @ Lisa Needham divalotus@gmail.com. You can also check out my website at www.theessentialdiva.com - The Essential Diva: DIY Healthcare

Lisa Needham

Oh, and I forgot to mention that the study that Jennifer Edinns did was not only on MRSA but she also talks about klebsiella.

Hi Asphyxia, no worries if you don't want to post these...i am just an information junkie (i think i was a scientist in another life time ;-) Here is some more info on Essential Oils.
I have been doing talks at hospitals and centers on how to use EO's as health care..as opposed to our nations traditional 'sick care' system. I also do classes at my yoga studio called Medicine Cabinet Makeover and they are well received. I think many are tired of the typical health paradigm and are just ready for alternatives. Anyway, enjoy the info. I am sending my brother inlaw your blog post so he can better understand his issue...thanks again.
Lisa


The Power of Essential Oils

The ongoing battle against multi-resistant strains: In-vitro inhibition of hospital-acquired MRSA, VRE, Pseudomonas, ESBL E. coli and Klebsiella species in the presence of plant-derived antiseptic oils
http://www.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pubmed&id=23199627&retmode=ref&cmd=prlinks

Warnke PH, Lott AJ, Sherry E, Wiltfang J, Podschun R, J Craniomaxillofac Surg Jun 2013. 41 (4): 321-6
The ongoing battle against multi-resistant strains: in-vitro inhibition of hospital-acquired #MRSA, #VRE, #Pseudomonas, ESBL E. coli and Klebsiella species in the presence of plant-derived antiseptic oils. The fight against hospital-acquired infections involving antibiotic-resistant microorganisms has become of critical concern to surgeons worldwide. In addition to the development of new effective antibiotic chemotherapy, exploration of ‘forgotten’ topical antibacterial agents from the pre-antibiotic era has recently gained new attention. We report the promising efficacy of plant-derived antiseptic oils used in traditional aboriginal and south-east Asian treatments such as #Lemongrass, #Eucalyptus and Tea Tree Oil (#Melaleuca) in the inhibition of clinical isolates of methicillin-resistant #Staphylococcus aureus (MRSA), vancomycin-resistant Enterococcus (VRE), multi-resistant Pseudomonas aeruginosa, ESBL-producing Escherichia coli and Klebsiella pneumoniae in the in-vitro setting. Large consistent zones of inhibition were observed for all three plant-derived oils tested in an agar diffusion test. The commonly used antibacterial agents chlorhexidine 0.1%, and ethanol (70%), and standard olive oil consistently demonstrated notably lower or no efficacy in regard to growth inhibition of strains. Notably, Lemongrass oil proved to be particularly active against gram-positive bacteria, while Tea Tree oil showed superior inhibition of gram-negative microorganisms. As proven in vitro, plant-derived antiseptic oils may represent a promising and affordable topical agent to support surgical treatment against multi-resistant and hospital-acquired infections.

Found using mAbstracts on the iPhone. Get it here: http://bit.ly/mabstracts+

I'm a bit weary of blogs like this because though it's comforting to be around others who suffer as you do and it's nice to think someone might come up with a "cure" more often than not these are simply places to take comfort that you are not the only one suffering with a strange disease....I have two brothers who are permanently disabled with AS and though I didn't know what it was called, I've been dealing with it for 35 years, most of my life... I know that it's due to an overgrowth of parasites, whether it's just the one particular bacteria, I don't know, or care. I think the only way to efficiently deal with it is to totally cleanse your system which begins with a long fast followed by a special diet. I don't have the will power for an extended fast but I've changed my diet and that's helped. I also do yoga to straighten my spine. The main point I'd like to make is don't believe anyone who tells you that it's irreversible! My spine was curved and locked up and I've been doing my yoga etc. for years and I've gained an inch of height and gained motion. My spine cracks and pops big time! But I'm slowly breaking up the scare tissue or whatever it is holding the vertebrates together. Much pain and much die off but my spine is slowly coming back/healing.

I have used the low starch diet for the last 10 yrs and only have symptoms when I overload on starch again. Usually when we are travelling.
Anti- inflammatories I use are fish oil, olive leaf extract and ginger tea when I have a flare up of symptoms.
Have just been reading about resistant starch which occurs when starches are cooked then allowed to cool that is potato, pasta, bread( frozen then toasted) the starch sits in the gut and Klebsiella feeds on it.
To do this diet you need to learn to cook and know the ingredients in your food.

Hi,
i to have A/S and get terrible pains. i get them in the neck,shoulders,back.chest mainly around the sternum ribs,hips knees feet calfs hands almost every where. i get tingling all over the body numby feelings in shoulders, feet hands head it's not pleasant. i have been to A&E 10 times , they check the heart and tell me it's all muscular pain.pain killers are not working and i have spent over £2,500 on accipuncture ,massages and different tyes of natural remedies like gh3 gold, unpasteurised vinegar,manuka honey things like these and many more with no success.i now intent to cut out bread, pasta, wheat,gluten,chocolate and see how i go after a weeks trial. will let you know how i go, thank you.

Hi Lisa,

Thanks so much for your detailed comments. My apologies for my slow reply - I have been snowed under and also travelling overseas, but finally today I had the chance to sit down and properly digest everything you wrote. Thanks so much for taking the time to share your knowledge. I've had a look at the abstracts and the PDF you linked to. A few questions: which specific essential oils showed an impact on klebsiella? And how are the essential oils administered? Have you read the full paper or just the abstract? I'm interested to know if these questions are covered in detail - I couldn't find a free version of the full paper. But perhaps you know the answers to these questions based on your own work. Thanks again!

Asphyxia


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