Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Juliana - Help sought from Dragonslayer

John

I was reading your replies to gratefulOne and realized I have been clueless when it comes to helping my daughter Juliana.

She is the weeest of my triplet daughters now 22 almost 23. She has a moderate anxiety disorder, some OCD and a poor diet.

In recent years she has battled with stomach issues which have now evolved into battles with migraines, what she calls “no energy”, weight loss, hair loss and panic attacks.
Her health has diminished to the point where she rarely goes out due to fear of passing out or having embarrassing stomach issues.


It’s hard to tell what is connected and disconnected.

When the girls were young we tested all of them for AS because of its generational presence in my family

They all tested negative.

We have tested Juliana for everything including SIBO. They did the breath test. All came back negative. She is now looking into POTS.


After reading your replies to the newbie I am more convinced Juliana DOES have SIBO despite the test results.

My head has never been particularly clear on the NSD stuff, that is to say, the proper way to aggressively initiate the process

Juliana’s OCD makes changing her diet problematic she eats the same meals every day at same time. Much of it is processed.

Breakfast is eggs scrambled on whole wheat toast and blueberries

Lunch is pasta with steamed broccoli

Dinner are chicken tenders (frozen prepackaged Kirkland brand) more broccoli, blueberries and Bob Evans mashed potatoes.

Wretched diet, I know, but she is so scared and feeling so lousy I believe despite her OCD, she is now willing to change her diet.

How would you start? As I said initiating this thing poorly is a concern and despite the SIBO test coming back negative could she still have SIBO.

Also perhaps unrelated, my Mom, has AS. She is now 84 and still golfs and such like her crazy son. Azulfadine has been her miracle medication. Just thinking that maybe it would benefit Juliana and be something she would readily amenable to try since she adores her grandmother.

Any insight would be profoundly appreciated.

I love this place and you are the very soul of this place in so many ways.

Hey, SteveC!

Nice to hear from You, albeit sorry for the reason! After reading about Julianna, I have some ideas but only vague impressions. Thinking of digestive disorder starring (ta-da!) The Gall Bladder. Could be wrong, but start with some supplements. Ox bile 500mg first between breakfast and lunch. Myrrh 1g to 1.5g or two tablespoonfuls of Swedish Bitters to avoid stomach issues. Stonyfield Farms yoghurt (Brown Cow can be used instead) 2 to 4 ouz maximum per day. With breakfast is Okay. 14 teaspoonfuls EVOliveOil daily, especially a couple immediately before each meal. So I understand that this would not be such a radical measure but prefer changing things slowly. This would be my approach, if she were my younger sister (great-grandaughter, really!! LOL).

What was the METHOD of testing for HLA B-27? Remember for good reasons (oh, You missed that lecture! But thanks for the infested PIZZA!) women present symptoms much different than men.

Check Julianna's SKIN; compare with Jamie and Tonimarie. Look for color variation whether she is darker or lighter or more yellowish. Any rashes, itching, odd bathroom issues--they should talk [*bleep*] with You! TIME to post-prandial relief, CHARACTERISTICS, etc.

See how she does with initial gentle nudges above and let us know whether there are any changes in any direction.

BLESSINGS of HEALTH to everyone

John

Thank you so much

Will try these suggestions

I hope you and your loved ones are well

So sad that this place isn’t the dynamic thing it was for so many years.

Live that I can still find you here. You are a true stalwart of this battle.