Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Exploring the mystery of AS...

Hello,

I'm a 35 y/o male with pre-as symptoms. I carry the 27 gene, numerous iritis flares, bad hip and low back pain mainly on right side, ibs problems started at 30 and have not stopped. MRI of sacral joint in lower back was good/not fusing...hips looked "like an 80 y/o man". I eat a ton of starchy foods. I weigh 145 and am 6'1". Life long asthmatic. Swedish, German heritage. I live in Bend, Oregon.

A bit of my background; I work as a self employed glassblower. My father taught me stained glass at 11 y/o and I've been involved in glass art ever since. I depend on my health and keep in shape with yoga. I'm married to a wonderful supporting wife of 9 years. No kids. One special dog. When I'm healthy I snowboard, mt. bike and hike etc.

I was treated like a hypochondriac by the docs in my late 20s or drug seeking kid complaining of pain. After years of random pain, one day thought I had glass stuck in my eye, the eye doc says to get checked for AS. The rest is classic, started with meloxican, then sulfusulzine (sp?). my liver and stomach have not been happy so I recently stopped the sulf. now having a bad flare and have lots of work to do and bills to pay! Finding this site am preparing to try LSD or NSD. I'd like to try the apple fast but I'm underweight and really can't afford to lose 5 lbs. seems when i lose weight will get back flares...

Another issue is food. I have allergies to nuts, asparagus, peas, and soy protein and soy flour, chickpeas. Used to get hives from eggs but I quit eating them... So maybe egg is ok. So my eating habits are not starch free...oatmeal with bananas, burger, pizza! I rarely drink alcohol but I used to in my 20s... Now it's peppermint tea and occasional coffee

I love smoothies and am considering a vita mix blender.

I have seen rhumy and now getting help from integrated doc. Food allergy testing underway, taking cod liver oil, b complex, coq10, vit d, probiotic. Currently having iritis flare and have pred drops. Sucks though as I need my eyes to blow glass, right eye is milky, sore. Dilating the eye causes no work. But I understand the need to stop the flare to keep the eye. I also can't work long during bad back flare ups,,, last week.

Enough of my ranting, I'm posting this as a hello and hope to join the journey and post some progress. But also any tips and thoughts are welcomed. Thank you admins and crew!!


Sorry for the choppy post, I'm on a frustrating iPod.

James

To add, just received scrip for LDN from doc. Considering that.

Welcome! I am so sorry you are having such a hard time. My eyes were a huge deal to me until I started taking Imuran. I took it for 7-8 years without an Iritis/Uveitis flare at all and it hasn't flared since. It seems as though you need an oral medication to calm down the eye. I still have eye problems but not the Iritis/Uveitis. I do have scarring from having it so bad.

It sounds like you are on the right track to do all you can to help yourself. I am like you. I wouldn't do the apple fast if I were in your situation.

I am glad you are here. I hope you will come back often. It is a great group of people

The glassblowing is exciting. That has always amazed me. Is any of your work online anyplace?

Blessings.
Possi

Hi, James:

Great to meet You! Glassblowing--wonderful art! Always been interested in that.

Well, You can get over iritis pretty fast; I have some suggestions within my "Important AS Resources" link part of my signature.

Stay well away from most powdered stuff--I don't trust any flour or product therefrom.

Yes, eggs are one of the most important foods on our NSD menu, and You should be able, with a little healing, to eliminate many symptoms. I had asthma that was both seasonal and triggered by macadamia nuts and Brazil nuts--tested this many times. After a year on NSD and antibiotics, I challenged my trigger of macadamia nuts (great NSD food, btw), and found I no longer had the asthma not even seasonally anymore.

Take advantage of KA, and don't allow AS to become any more than PRE-- trust me, You don't want anything to do with the skeletal damage!

WELCOME and I wish You considerable renewed
HEALTH,
John

Hi James,

Sorry to hear about being pegged 'the hypochondriac' for years. Not so amusingly, this is how I percieved my mother, and grandmother, until my health took on your pattern around age 30...

I'd encourage a 'lifestyle change'. There's plenty of online info regarding anti-inflammatory ways of eating/living to make one want to try it. A few sites:

http://coolinginflammation.blogspot.ca
http://thepaleomom.com
http://www.sickopportunity.com

I used to be the ultimate starchoholic, with a serious sugar addiction, so even if my inflammation hadn't been reduced (which it did!) I would have benefitted greatly from the diet change I made two years ago.
(Lots of auto immune problems, and diabetes, in my Swedish/Finnish family.)

Have never had iritis, but have read many peoples' claim that their iritis went away when following the NSD.

As far as weight loss goes, I swear by cold pressed olive oil, and lots of it!
I have no problem eating huge amounts of salads, two massive ones per day (breakfast & lunch), each one with 125ml of olive oil. I see a big difference in 'fuel levels' if I don't ingest the oil. Become hungry much more quickly, less stamina, etc.

Also think a VitaMix is a great idea. I have a juicer, and a green juice is often my dinner (after two years I now have to 'watch what I eat' to not gain weight).

All in all I've gone from being in a zombie state, capable of absolutely nothing (not sleeping, walking, working) to working fulltime, and a bit of running, riding & xc skiing.

Have just started LDN as well.

Cheers,
Kristine

Welcome to Kickas James,

Bend, Oregon... I believe one of my former employers has a location there (Menasha Corporation) with timberland.

Hope you can find some answers and support here, I turned to diet approach over 10 years ago when my liver gave out on azulfadine (similar to sulfasalazine) after six years of taking it. Medication worked wonders for me, the diet does almost as good, but limited in how much exercise I can do.

Maybe between diet and your rheumy, you can find some answers.

Best to you,

Tim

Thank you for the responses! The kind words and support is encouraging.

I took some time to research the links offered. Thank you.

I'm on day 4 of the NSD but it is difficult no doubt. I went from eating a massive amount of starches per day, like 4 or 5 big handfuls of it I suppose. Luckily, a fine meat butcher is located down the street that also offers veggies. I'm actually slightly looking forward to this diet/lifestyle. Just hoping I don't lose weight or energy.

I'm also on day 3 of the LDN. I feel normal but a lil lightheaded at times. Not sure if it is from the drug, diet, other. Back has been slightly better but it usually switches from s.i./back to eye.

The eye is about the same, bad, milky, annoying, but am able to blow glass about half-time. Thinking the bright light of the torch is possibly not good for it.

Trying not to take the meloxicam as my stomach/colon is doing bad right now.

When I told my integrated doc about the research I've been doing was impressed. He mentioned that they (a lab out East) can take samples of my own Kleb, grow it and find out what kills it. When I further asked about the bio-film he exclaimed "not even most naturopaths know about that!".

Thank KickAS!!