Sjogren’s Syndrome

[mcellen111213]

Hello all!
I have low numbers on all tests but have tested just over for the Sjogren’s antibodies (B). I have been pursuing a diagnosis since May. My tests would read normal then high then normal…many of you have been through it so I won’t go on! I felt really terrible for a while (fatigue, pain and swelling in my hands and feet, my knee was so bad I had an MRI and wore a brace for a couple of months, some fibrosis and skin peeling in/on my hand and both feet, DRY eyes and mouth, mouth sores, and weird, intense pain in/near one kidney and rectum). I could not get any help. The first rheumatologist I was referred to told me I had anxiety and it was all in my head. Her tests showed everything negative (my primary care doc’s test had been positive). I saw an immunologist who referred me to another rheumy and her tests showed me positive for the antibodies (though,she thinks my symptoms are not connected!). Through this, I started an autoimmune diet which helps and has me feeling better but I need to do more. I have swollen glands, a chronic sore throat and a cough that is worrying me (the doc say virus but it never goes away). I saw one AP story for Sjogren’s as the only diagnosis and she had great success. Has anyone else had AP for Sjogren’s? I would love to hear about your experience(s). I have read the Road Back book and am waiting for the Arthritis Breakthrough book to come.
Thank you!
Ellen

[Maz]

Ellen, sorry it’s taken time for you to get a reply. Things usually slow down here in the summer months. It’s rare to see anyone with primary Sjogren come here to post, but if you use the search box and use key words, like Primary Sjogren’s, some older discussion threads should pop up and you may even be able to reach folks by replying on old threads or private messaging them.

I’ve seen studies on bovine colostrum to help with the oral and dental symptoms of chronically dry mouth/throat. Patients who have to take RAI for thyroid often suffer with salivary gland pain and reduced salivary flow after treatment. Chewing the bovine colostrum powder (or non-denatured whey) or oil pulling with coconut oil seems to help prevent dental decay. Oil pulling especially can stimulate salivary glands. Maybe worth researching for yourself?

Oral findings in patients with primary Sjögren’s syndrome and oral lichen planus–a preliminary study on the effects of bovine colostrum-containing oral hygiene products.

I recall a story in an old hard copy foundation newsletter of a Primary Sjogren’s patient achieving remission with AP. Brown was of the opinion that all rheumatic diseases could have a good degree of success. Secondary Sjogren’s seems to resolve along with other rheumatic symptoms, although Prinary Sjogren’s might need more patience and additional supportive measures.

Glad you found us and hope to hear of your progress over time! Please keep us posted!

[mcellen111213]

Thank you Maz! I will keep you posted.
Ellen

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