Gwen (Cleveland, Ohio) on 09/28/2014
I'm a very active, lean, 56-year-old who was experiencing several Sjogren's symptoms for months and they were significantly debilitating -- dry mouth, dry eyes, lung soreness plus heart palpitations. I refuse to seek out the help of traditional doctors because of their reliance on chemical cures. I did, however, engage a Sports Nutritionist that came highly recommended by an active, lean colleague of mine, who is 57 years old. I'm mentioning my age and my colleague's age so women who are of the same "vintage" realize that there is post menopause hope as one's body changes. When I shared my symptoms with the Sports Nutritionalist he said "Have you been tested for Sjogren's?" He also said, "At a minimum, you should be consuming 3000 mg of high grade fish oil per day." I was consuming 1000 mg per day. Interesting.
I next went online, read your comments, and did the following: increased my fish oil soft gels consumption to 3000 mg per day (Carlson Norwegian Salmon Oil), started taking 2 Solgar Flaxseed Oil 1250 mg soft gels per day and started taking 2 Solgar Super GLA Borage Oil 300 mg soft gels per day. The next day, my dry eyes and dry mouth significantly improved! The day after, my eyes and mouth felt normal again. I am still experiencing lung soreness plus heart palpitations, but I have noticed slight improvement there as well. My thought is that it may take longer for the rest of my body to get "fully lubricated" once again. I truly believe that I'm on the right path, so I wanted to share my experiences in case it may help others. As a side note, my Sports Nutritionalist also told me to switch multi-vitamins -- moving from a tablet to soft gels because they are absorbed into your system whereas tablets can pass right through you. One of his clients was being x-rayed for some type of condition, and the doctor saw the multi-vitamin in the gentlemen's intestinal tract, e.g., it hadn't been absorbed into his system. I am going to make this change as well.
I would recommend that if you increase your oil intake, you make sure that you're not over-doing it by eating fatty foods. Too much fat could cause other problems. Eat healthy!
Replied By Prioris (Fl, US) on 09/29/2014
Replied By Gwen (Cleveland, Oh) on 09/29/2014
Replied By Prioris (Fl, US) on 09/29/2014
Here is something on Sjogren's Syndrome.
http://www.seabuckthorn.com/Omega-7 Sea Buckthorn HANDOUT.pdf
They used 3 grams of Sea Buckthorn Oil
It seems to help some people with that syndrome
Replied By Pj (Tennessee) on 04/26/2015
Replied By Rsw (Uniontown, Oh) on 04/26/2015
I was recently diagnosed with Sjogren's Syndrome, but because of the dry eyes and mouth from previous Sicca diagnosis, had been taking many of the same oils you mention. I don't think they were helping me. Then, as I was looking at some of Ted's comments (which I can't seem to find right now), he said the body can't handle all these oils, and even fish oil should be taken about twice a week only. He only uses coconut oil. I have stopped using the oils but remain confused by all this. Does anyone have a better understanding from Ted of what oils may not be good to take, which may be all of them except coconut oil? I think he advises Borax for Sjogren's. I also have high iron and had hoped the oil would stop my blood from sticking together. (Had Hep A, can't donate blood, and doc will only authorize phlebotomy if iron exceeds 100) Thanks everyone.
Replied By Candy (Clarkston, Wa) on 10/26/2015
Replied By Judy (Maryland) on 05/24/2016
Replied By Rsw (Oh) on 05/24/2016
I got severe Hep A in the 80's, most likely from eating contaminated food at a restaurant. Which one, I don't know for sure because it took about six weeks to show up. I will never be able to donate blood or organs because of this. High iron can lead to sticky blood and also damage organs, so if it gets too high, my doctor writes a prescription for a phlebotomy and I can give blood at a donation center, and it is is disposed. Some doctors think high iron is implicated in heart attacks so I try to watch my levels.
Replied By Sandy A. (Albuquerque NM, USA) on 01/20/2021
Please have further testing done. My sister was told she had too much iron in her blood but when her husband insisted on more testing, they found she had cirrhosis of the liver. It was nearly too late and she almost died.
Replied By Joyce (Oceanside, Ca. ) on 07/27/2016
I also have Sjogren's and am happy to read the relief which can cure it. Cod liver oil is horrid...rather than pills, are any other oils helpful? It gags me...but I could increase my take of Olive Oil...any comments? I also use coconut oil, but would have a tough time taking it as a spoonful. I get especially dry after a pain pill.
Replied By Dorothy (Mass) on 10/28/2016
Replied By Angela (Englewood, Kansas ) on 07/31/2022
The dry eyes, I use Systane. My eye Dr recommended it and it's amazing. Great for lubrication, not aggressive like those script eye drops.
Replied By Karen (New Jersey) on 11/06/2017
I've got auto immune disorders--Sjogren's, RA, Hypothyroidism. My current problem is extreme skin dryness/burning pain with cracks/splits in my skin above my mouth. I'm looking for a Rheumatologist in the NY/NJ area.
This condition is both painful and unsightly.
Anyone else have this condition? I've tried so many moisturizers, oils, they help a little. I watch my diet-organic, free range, no dairy, supplements and lots of water.
Any other suggestions? Much appreciated
Replied By Brooke (CO) on 04/18/2022
Have you tried Manuka honey? My lips get so dry, they crack and bleed and swell and nothing topically helped until I tried the honey. It is a miracle and helped the dryness go away in two days they looked almost normal again. It's 100% stronger than regular raw honey, made from bees in New Zealand from the tea tree. Look online and see all the benefits. Find some at your local health food store.
Replied By Brandy (Alberta ) on 07/18/2018
Replied By Angela (Englewood, Kansas) on 07/31/2022