Hla-B27

[ramakentesh]

This may be of interest to some.

A guy emailed me from a website about Ank Spond regarding POTS. He is also HLA-B27 positive and has POTS. So I think that takes the tally up to about 11 patients in this catagory (this gene and POTS). It was interesting for me to note that the males in this catagory tended to have mild to moderate Ankylosing Spondylitis, whereas two of the females also had it, but many females did not have AS at all or had been diagnosed with Fibromyalgia.

I see a few people here also have a positive result for that gene for what ever reason.

if you do, can you plaese respond so I can collect this data. I dont want to get ahead of myself but I feel this is a fascinating link that keeps popping up along with the autoimmune angle for POTS.

For me I wax between POTS and AS - never get them both at the same time.

I wonder therefore whether a low starch diet - often suggested for improvement of AS would have any effect on POTS for a HLA-B27 positive sufferer (assuming it isnt just coincidence).

Thanks!

[Chaos]

I'm HLA- B27 positive and have POTS. I don't have AS as far as I know but I do have a grade 2 spondylolisthesis. All 3 of my sons are HLA-B27positive as well. We suspect my oldest has AS but it hasn't been confirmed...still trying to get him into rheumatologist. My daughter is HLA-B27 negative. Several of my kids have POTS type symptoms but none are diagnosed with it. All of my kids get migraines.

I've always felt best on a "zone" type diet... higher protein, fruits and vegetables and avoiding high glycemic index foods. Ironically when I'm in my worst POTS flares, I crave carbs.

[CharmedLinz]

Thanks to Chaos for alerting me on this post.

I am HLA-B27 positive, with POTS, Mitral Valve Regurge, Dysautonomia (Neuro Cardiogenic Syncope), MCAD (?) plus High Histamine, mild Chiari Malformation, and unknown Autoimmune disease that is also causing failure of my endocrine system. Probably SMN but no one here can test for it.

Too many other things to mention. I don't have any evidence of AS.

My Grandfather had an extremely bad case of AS that made him retire in his 30's. He was B27 positive. He had all aspects of AS to the extreme. We all believe he had Dysauto and he was also very Marfan like. They also found a congenital heart defect when he had a quadruple bi-pass in his seventies. He passed in 2009 of bone cancer.

His Daughter, my Mother, is also B27 positive, has no signs of AS but has had bouts of the Eyerhitis, or Uveitis that goes with it. She was very POTS like as a child and teenager. As an adult has managed fine, though she still carries a fairly high heart rate and dizzies easily.

I have 2 cousins on the same side of the family who are siblings. Male older sibling has Mitral Valve Prolapse and Regurge but has never been diagnosed with POTS or dysauto and has not been tested for B27.

His sister has an extreme case of POTS that started for her at age 13. She is now 28 still has all symptoms and is on all the same meds we all are. She is struggling but functioning. She also got thyroid cancer 2 years ago and had her thyroid removed. She is also B27 positive.

We are all very Marfan like in my opinion. Tall with very long limbs, though none of us has had any genetic testing.

[ramakentesh]

thats great info thanks!