Hi this is my first time on the site. I have been diagnosed primary sjogrens although bloods were negative for that and positive for lupus, though no symptoms of that. I was diagnosed about 4 years ago, after suggesting to my gp that my symptoms may not just be menopausal but sjogrens. I have been very lucky that I have been able to manage symptoms ( dry mouth, dry nose, trouble swallowing, dry eyes, dry female regions, irritable bowel) with OTC products but I have been working hard to find more natural ways of supporting my health. I found reading some material about lupus that fermented products help especially sauerkraut. For those in nz there is a Christchurch firm eternal delight that produces organic sauerkraut and posts around New Zealand. Also from Christchurch I purchased some blephasteam goggles that were expensive but you plug them in and they create moisture environment for dry eyes. I was interested to see blogs on Mannatech products as I have found a good product in nz from clinicians brand for bladder. It also is just a natural 'sugar' like ambrotose from Mannatech and I found it really helped when I was irritated in that area. It is quite cheap compared to Mannatech products however having read the posts on them I think I will try them. I have really tried to modify my diet eating as healthy as possible. At the moment i have a back pain issue that wont go away and am wondering is sjogrens is a factor. I am keen to hear from others who are trying alternative support.
Natural support for sjogrens - The Australian Sj...
The Australian Sjögren's Syndrome Association
Me too Wiinan. I have used Mannatech stuff. Also eat some sauerkraut every day.
Am currently on steroids because of lung issues but HATE them. Am under strict instructions not to drop below 7.5mg/day until seen by a top asthma specialist in London, but have already dropped to 7mg today! Ooooops. Can't bear them - constipation, 2lbs weight gain per month. Can you imagine - that's two stone in a year, at least 2 dress sizes - I don't think so!!! Infections. Bruising. And that's before you even think about bone loss.
So yes I am using all sorts of alternative approaches. Butterbur (asthma, migraine, antihistamine). NAC - chest congestion. Citricidal - antifungal. Loads of general supplements (e.g. CoQ10, magnesium, zinc, EPA, etc etc etc.) Gluten- and dairy-free diet, as far as possible. Should really go back to raw organic vegan diet I followed before - felt best on that but very difficult socially of course.
If you'd like to swap notes in more detail, by all means PM me.
All the best, JudyCoppernob
Thanks Judy sorry to hear about steroids, I can imagine I'd feel just the same. I have been tempted to try vegan but haven't got up the gumption yet, I have got a dehydrator so have tried making my own crackers etc. Am trying to be mostly gluten free also, and avoid dairy except I do like my yoghurt!!
Hi Wiinan, I too am from Christchurch and have benefited greatly from learning Zhineng Chigong as a form of daily exercise. This is my alternative to taking meds for SS. In terms of preventing and treating symptoms, I have put this website together on Wix to share strategies which have and are working well for me: naturesquared.wix.com/sjogr...
It has links to information on sprouting beans/peas etc, and soaking grains or nuts in order to make them easy to digest. Along with eating fermented probiotic foods, antioxidants are a big help, and trying to stick with alkaline fruit and veg. The macrobiotic diet is working well for me. Organic hexane free cold pressed castor oil for the dry eyes - a drop in each eye before bed at night maintains the lipid layer at a time when tear production is at its worst.. Be aware also that early Autumn is a bad time for the eyes due to the brightness of the sun which is sitting lower in the sky, and the winds are often cold too, which they don't like.
Actually I'm from Tauranga, just seems to be CHCH isplace to source products!! I have been interested in Chigong though not tried it but have been going to restorative Yoga which uses lots of props and is gentle, very relaxing, best thing I have ever done especvially improving my breathing. Thanks for tip about Autumn as my eyes had been playing up last week.
grahamb, I've just joined this site. The last couple of weeks I've been using organic, hexane free castor oils in eyes at night. Do you find the castor oil at night helps dry eyes during the day? That's what I'm hoping for eventually! Feel like putting the oil in during the day as it's comfortable at night, but it'll be blurred for work! Think I'll try a drop of castor oil in my dry mouth at night. I was diagnosed in 1991 & have been using Ambrotose Complex, Plus & other supps from Mannatech the last 9 years (great stuff no intention of stopping supps!). However, I still have dry eyes & mouth I eat alkalizing, probiotic foods also.
I only used the Castor oil at night, but since then I've switched to using homemade eyedrops ehow.com/way_5397657_homema... and I find that these are just as effective as the expensive pharmacy bought preservative free ones.
I'd want the homemade to be better than the pharmacy bought eye drops!
Do you not use castor oil at all now?
Your link suggested using castor oil during the day.
Wouldn't expect it would be convenient.
I was using the castor oil at night only as a substitute for pharmacy bought gel eyedrops, and never used it during the day because it's too thick. I was going without eyedrop during the day, but found I would, on windy, dry days get dry-eye attacks, which i found that if I forced myself to keep my eyes open, then after maybe 10min of pain, the nose would start to run clear and the tears would start to flow, and then I would be okay for quite a while. That was doin' it really tough! Now I use only the baking soda ones, and use them before bed too. Dry/windy days i have to remember to use them more, but i don't think I am having to apply them any more than I would the store bought preservative-free drops.
I thought salt would make your eyes drier.
Do you have sjogrens?
The recipe gives you something close to a saline solution. Yes, I've had Sjogrens for over ten years. When I looked at the ingredients they sounded a bit counter-intuitive (salt in the eye!?) but it's only 1/4 teaspoon of salt and I think it's the same principle as taking some salt when you drink water so that the water is retained in the body longer, and also it's to do with the pH where the lack of tears creates a slightly acidic pH, and this recipe creates a slightly alkaline solution to bring it back in balance.
Yes, bicarb soda is alkalizing.
I eat alkalizing food. Water is alkalizing.
If I do salt rinses the salt affects my eyes. Only use a very small amount of salt if I need to do a salt rince like now having had a tooth removed.
No easy solution to these dry eyes/mouth.
I had lymphoma removed from my left parotid gland Oct 2015 due to dry mouth.
Lump had been there for years.
Drs kept saying a little swelling until a trainee Dr was anxious to get the lump checked.
Thanks to her & the lymphoma being slow growing I seem to be ok.
All the best with the home made eye drops.
I'll give it some thought.
Hi Wilnan I am one of the ones promoting the Mannatec products of Ambrotose and Plus. The thing that was pointed out to me as being vitally important is the length of time it takes for the product to help the body to functon better in all ways. I have been on it now for 6 years with no thought of stopping it. Over time everything just gets better and better. I will always have SS but don't get the chronic fatigue now. Any flares are cushioned right down and of short duration. I am back to dealing with 7 young grandchildren. I have my horseriding life back and recently travelled to Cambodia with my sister with no problems. My sister also has SS and she is now taking Mannatec as well and her life has been turned around. I find that apart from a few other supplements (for me VitB.Arctic Cod Liver Oil. Flax Seed Oil and VitD3) I can carry on with a normal diet. Yes it is expensive but I am happy to go without other things to have this better quality of life. For me it is an investment well worth it. I find the Mannatec website confusing and just use their 0800 no.
For New Zealand callers it is 0800 333 250 and for Australian callers it is 1300 361 878
Many thanks for the more detailed info re Mannatec Spice, a collegaue had mentioned them to me so I think they are worth a try.
Yes, Spice, Ambrotose Complex & Plus are my best supps for the last 9 years (now Manapol too). No more fatigue or flu achiness. I don't have trouble using the Mannatech website. I've found high dose krill oil has helped my dry eyes a little, certainly not over the line & really helped my rheumatoid arthritis hands this cold winter. If only Mannatech supps would help my dry eyes & mouth life would be A1. You'll see in my reply to grahamb I'm trying castor oil in my eyes at night hoping for the best!
hello spice. this is my first time on this site. I have had SSfor 25 years and now as bad as ever. I have gone onto the mannatec website (Australia) and I am confused which products to buy as there is Advanced Ambrotose; Ambrotose AO; Ambrotose Complex; Plus with Ambrotose. Would you mind confirming which ones you take? Thank you very much
Hi thip I have looked up my records on this and am surprised that I started on Mananatec in 2006! Back then there was only Ambrostose Complex and I got Plus to go with it. I am sure that any of the variations would be more than helpful. It is trial and error I guess but the main thing is to give it time. Don't be too hasty to say 'this doesn't work'. I kept on taking it with a big degree of doubt for 3 months and realised I wasn't so tired. Other symptons reduced and it has just gone on from there. I have never stopped taking it. I am on a very reduced maintenance amount now. I have after all this time stopped the Plus and so far am doing OK. I hope to always have enough money to keep up the Ambrotose. I am very interested to see the other combinations are available. On another subject I have found that taking Cod Liver oil or similar regularly helped with my dry eyes. In the last 6 months I have been putting moisturising cream (whatever is handy) on the outside upper part of my eyelids. I have much improved tear production and a recent eye exam pronounced them healthy. So not bad effects. Good luck.
I have dug out a bit of info on Mannatec. It is a nautral supplement that involves cellular health. Our bodies are composed of 200 different types of cells and each type is programmed to live without replacement for a time span that complements its function. Some cells change every few months and others may not be replaced for a year. Also a few cell types such as the heart muscle cells and nerve cells are never replaced. This is why it is important to stubbornly stay on the product so that it can work to keep the cells healthier. I take one plus tablet morning and night and one small scoop of the ambatrose powder morning and night. You continue with whatever medication you are and slowly you just don't need that as much if at all. It just takes time. I go through a container of Plus a month but the Ambatrose lasts about 4/5 months for me. I feel that it has halted any progression of the syndrome. I listen to what others are suffering at the Auckland SS seminar that I go to and think 'my god that would be me if I wasn't on Mannatec. Good luck and God Bless
Yes Plus basically supports your main organs. Thats how it was explained to me. I'm not to worried about the finer points as this combination just works well for SS people. My daughter and partner encouraged me to try it for ages then got it for me for Xmas one year. I doubted it for awhile as I think we all are conditioned to have faster results. I felt obliged to carry on and I am so glad that I did. I had no idea what the outcome would be but gradually I just started making progress and it has just continued to get better and better. I was able to drop off the anti inflamatorys and I very rarely even need a panadol. I still use eyedrops when needed. I use a Thera tears gellpad (heated for 35 seconds in the microwave) in the coldest part of the winter first thing in the morning tohelp the oily part of tears to flow better and am finding the OraMd tooth doctor drops on my toothbrush keeps my mouth cleaner and more comfortable (got this of this website) The Vitaman b supplement has helped greatly in keeping my mouth ulcer free. It is a minefield one walks through experimenting with what will help.
I am in the states and order Domperidone from NZ for severe nausea related to Sjogren's. Am loving reading posts here about alternative treatments, such as the castor oil, I did not know this could be used in the eyes...and afraid of infections using it, so more posts about this would be helpful for me! I have constant eye problems: blepharitis and conjunctivitis. Currently use Lotemax steroid drops which work wonderfully, Restasis which doesn't truly do the job of producing more tears, and a variety of gel drops and ointments such as TheraTears.
I have a sugar free diet - if I have some unintentionally (like last night in a pasta sauce my husband used) I suffer all night with joint pain. But I tend to use most things for RA - like flax seed oil. I have started using Vit E oil for external and internal use. I use a special oil based eye ointment at night and it is wonderful - I get it from the pharmacist.
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