Hi all,
It's a bit disapointing that there isn't more chat about this nasty syndrome. Although I understand how hard it is to get a diagnosis. I probably seemed like a hypochondriac to my doctor for years. I had every infection,eye-infection, flu, sinus, parotid gland infections, losss of 2 molars, etc. took tons of
Antibiotics . Finally a rheumatologist checked my blood for the antibodies. I went to him for Raynauds in the fingers and some cysts on the knuckles that fill with the sticky joint fluid. I have a very high count of the speckled antibodies, there is no question that it is SS.
GP's just didn't pick this up and I had to insist I have a referral to the specialist for the fingers. You have to have that referral here in Australia to book in with a specialist.
I had never heard of Sjogren's, but it all made sense. I thought the dry eyes and mouth were part of perimenopause.
I am currently on Bee's Candida Diet for leaky gut. years of constipation has probably contributed along with
Antibiotics . A recent bronchitis which led to sore gallbladder area, scan which showed some fatty liver, but not stones made me consider the strict diet(no sugar, no grains, no fruit except lemons). I think my rib may have been injured as the pain has lasted over 3 months but is fading. and I am hoping that this strict diet will help the immune system, but it will take up to a year or more to find out. Nice side effect is that I have lost 15 pounds.
My Sjogren's routine consists of:
Mouth- Use Biotene toothpaste as regular toothpaste dries and causes canker sores. Use Biotene mouthwash regularly and floss. I also use the Biotene mouth gel around the gums at night for moisture. Avoid
Sugar free gum as this is very bad for autoimmune and can cause complications for some people. Unless you have one sweetened only with Xylitol.
(I have had the biotene gel cause some bacterial growth once, so watch for that and stop using, rinse with listerine until it goes away.)
Eyes: Fish oil capsules seem to help moisture levels, but I rely on Genteal eye gel when I go to bed and during the night when I wake up with dry eyes. Drops make dryness worse for me. A better alkalising diet and enough rest improves moisture
Makeup- I can only use Clinique. It took me years to connect that my eye infections were linked to normal makeup use and an irritation.
I have recently been using Ted's EC cure for some strange Demodex mites on my lids. It is 1% peroxide mixed with borax. This mixture is slowly working, and even though I try not to get it in the eyes, a little seeps down and I feel that it may be helping with some bacterial issues as the edges of the lids seem less red.
Sjogren's is a pain to live with, but just working with it helps. I will try and remember to report back in a few months about the results of the Candida diet as I do feel it may be all related.
My theory is even if you a have a predisposition to Sjogren's, it takes other factors, like leaky gut, candida, acid body and mouth, and chemical exposure to push you over the edge into the syndrome.
Keep posting here in this forum! I would love to hear of other's results and what works for them!
Cheers from Australia