Hi, everyone. Like many of you I read a lot about autoimmune disease. Here’s what confuses me. Everything I’ve been reading lately talks about boosting one’s immune system for better health, even those of us with autoimmune disease. I read about juicing, smoothies, eating Paleo, and the like. It all sounds good. But what confuses me is we’re often taking immunosuppressive drugs. Is boosting our immune system working against what the medication is trying to do? Can we eat better to feel better to the point of possibly not needing those immunosuppressives? Im curious what your opinions are. Thank you.
It sure is a confusing topic, Kim. I've read a lot of different things. One said that we have AI diseases because our immune system is actually weakened and 'confused'. Another doctor doesn't believe our immune system is the problem at all -- she believes we have an attack of errant mycoplasma (seen in labs in blood samples from all people with AI diseases) and our immune system is just going after the 'infected areas'. But, it seems to me that if our immune systems were healthier, we'd be better off which ever case is the truth.
Hi dancermom, I started Paleo over 7 months ago and it has helped. I went gluten free almost two years ago and dairy free a year ago. I see an acupuncturist and an integrative MD. The integrative MD is also an internist but uses supplements and meditation, etc. - holistic modalities - first and foremost in healing (above allopathic, which is reserved only when absolutely necessary). She is giving me supplements to boost my immune system. I started seeing her in March and asked her why she was doing that. I have to be honest, I had brain fog at my first appointment and can't remember her exact answer, but I do know it made sense and that I feel much better on the supplements. I do take plaquenil - have been since February 2014. I do think it's helped also. I also take Chinese herbs, meditate, take an Epsom salt bath every night. I don't drink alcohol or eat sugar (except from fruit). Is this hard at times? Yes! But is it worth it? YES!! I just started reading Spontaneous Healing by Dr. Andrew Weil, the father of integrative medicine in the U.S. You can also rent the DVD - or do both. It will give you an insight into the body's natural ability - and desire to heal and achieve homeostasis. Another good book is Anatomy of An Illness by Norman Cousins. Is written by a man who cured himself of ankylosing spondalosis (sorry, I don't know how to spell that). I look at Venus Williams who has Sjogren's and recently won Wimbledon - I saw her documentary...she has Sjogren's. I think we can totally heal our bodies but it takes major commitment and the mindset to get there (at least that's what the literature says). Oh, I also juice and drink smoothies too...I try to get those vital micronutrients in any way I can and I pray it works. You an also Google Dr. Terry Wahls, who "cured" herself of MS (she was in a wheelchair). People are doing it and I don't see any reason why us Sjoggies can't too!!
Hey Kim…I'm not a doctor but I can pass along what they have told me. I ask all of my doctors the same questions to get as much info as I can and I read endlessly. My doc recently suggested a Mediterranean style diet, avoiding or limiting wheat, dairy and processed sugars. As he explained it to me, those three are known to contribute to inflammation. He did add that not every diet works for every person. Some of his patients do better going totally vegan, while plenty have no difference eating meat. The point to the diets are not to boost the immune, its to reduce inflammation. He has had patients that were able to significantly reduce the amount of medications they needed.
Both he and my allergist have said that our immune systems do get confused in a sense in that they attack our own bodies or healthy cells. Whether its because they triggered due to an infection and just didn't stop or the system is going off on its own is kind of a moot point, if that is the case. They have both told me, under no uncertain terms, not to take anything that boosts the immune system like extra C, echinachea (sp?), etc because they system is already going nuts.
There are others here that can give you the technical and medical reasons why things work the way they do, but I figured a layman's answer may be a start. If it helps, I am not on any immunosupressant medications at this time. Counting my blessings on that one.
Hi EnjoyLife,
My rheu told me to get tumeric and fill capsules from the health food story for inflammation. Dr. Oz recommends an iced tea made with tumeric and powdered ginger for the same purpose. I have not done either bu would like to know if anyone has.
What is strange is that since the SS i have not had any colds or allergies or sinusitis. I used to have these all the time. In fact, I said to my PCP that I do not get anything that is "normal".
I am headed for yoga. Evidently there are some poses that address the lymphatic system.
Talk to you soon.
2akl
Since going paleo plus eliminating sugar and caffeine (90% of the time for the sugar and caffeine, I am not perfect!) my health has gotten significantly better over the last 10 months. I know it won't work for everyone, but I went from wanting to sleep all day and having constant joint pains to functioning quite well again. It has been a miracle for me and although it requires a lot of hard work to cook all the time, it has been more than worth it. I feel like I have gotten some of my life back! Check out the paleomom.com. Sarah Ballantyne is amazing and she has a whole section on autoimmune disease. She also has a book and a cookbook she just finished. She is also on the New York Times best seller list. She is the reason my health has taken a turn for the better. I only have to take meds right now for hypothyroidism. I have been told by my medical practitioners not to take anything that hypes up my immune system. Good luck in finding what works for you!
Hey 2akita…that is so interesting. I have read tons of articles that say turmeric and ginger are natural anti-inflamatories but I never knew how much you need to take to make it effective. I wonder too if it works. I don't get colds anymore either but one of SS's favorite things to annoy is the lymph nodes in the throat….it is quite annoying. And I get respiratory infections in one form or another but the allergy/asthma doc says it is because the allergies trigger the SS, etc which causes undue amounts of inflammation. Weird.
I have heard certain types of exercise are quite good for keeping lymphatic system moving. Nice that yoga is one of them. I really need to get more regular with it.
Hi EnjoyLife, my integrative MD has me on 3 capsules of turmeric per day. Here's the brand she has me on: http://www.amazon.com/New-Chapter-Turmeric-Force-Softgels/dp/B00FBPEVBS/ref=sr_1_1?ie=UTF8&qid=1408411298&sr=8-1&keywords=nature%27s+force+turmeric. I do feel like I've experienced positive change.
Hi everyone, I have been taking turmeric and ginger caps for about six months and can tell that I feel somewhat better. Can't hurt to try it.
Good to know Casey and bak!!! And Mom of 3, it always encourages me to hear of others having success with things like that. I haven't fully started as i am surprised to find out how much I have in the house that may be contributing to inflammation and fatigue. I eat fairly healthy so its been a little bit of a shocker. (I used skim milk, switching to Almond milk, etc) The information I pick up here is so great.
I tried turmeric for about a week or so and it upset my stomach so much I just couldn’t tolerate it. I was really bummed because I’d prefer to stay with natural as much as possible.
After vacation in One week my husband and I are going to do another elim diet…no wheat, corn, soy or dairy for 3 weeks, then bring them back one by one till we see what we can eat. Did no wheat and sugar for several 3 yr periods. Can’t hurt to try it again. Take cur cumin, with turmeric,or it is a form of it, for a month at night and the fibro leg pain that kept me up so many nights is quite gone. Need to check out paleo mom. Thanx
This post has filled me with renewed hope that there is a natural cure/remission for Sjogren's. Just what I needed to read to get me inspired and motivated. This sharing we are doing is so vital to our wellbeing.
I have had a week of slipping (busy mom)into gluten and a little sugar and boy am I paying for it . I am dragging my body around, head thick with fog and hoarse. I feel absolutely shocking but as per usual, I look fine. ( Sjogren's sufferers usually look fine) If I doubted the diet is essential then this is a clear indication that you are what you eat. I am glad I am feeling the effects of this slip with awareness. I know lifestyle is the only way forward. But boy oh boy now I have to get the energy to get through this week while I wait for symptoms to improve. It is as it is meant to be :)
I have copied and pasted info I need to research from this discussion. I think we all know what we have to do but it is a process and we need each other along the way, grateful :))
I am off to swallow a ginger pill and make some concoction with Turmeric. Also heard good things about this combo, so a daily dose it is.
Hi, everyone. I can’t thank you enough for your support and feedback. It’s nearly 4am and I am awake, suffering with pain throughout my body. I, like some, try to follow a mainly Paleo diet. A ketogenic diet was recently suggested to my by my PCP who is an MD with a great emphasis on natural healing and less prescriptions. He also has a nutritionist on staff whom I met with recently to go over the nuances of a Ketogenic/Paleo-type diet. She, too, suggested I stay away from gluten and dairy. She gave me some printed out recipes and I’ll be seeing her again soon. With much motivation I bought everything that was suggested. I use my Vita-Mix every day to make smoothies from mostly greens, I’ve tried ginger, turmeric, omega-3, probiotics, apple cider vinegar, and a few other things. I didn’t feel any better right away, but I didn’t feel any worse. I admit, the past few days I gave in and had a bagel for breakfast, pasta for dinner, and strawberry-rhubarb pie for dessert. Boy, am I paying for it. I can hardly make a fist with my right hand because of the swelling. I’m congested and just feel terrible overall. I’ve been eating Motrin like candy for the pain which made me sick to my stomach. But, today is a new day. I’ve found, rather quickly, that staying away from gluten and dairy isn’t just a fad, but something I must do to be able to get out of bed in the morning. Today is going to be rough, but I’ll make it. I’ll rest and treat my body good to hopefully feel well soon. I’m going to re-read that book by Dr. Weil, order turmeric in capsule form, and visit paleomom.com as suggested. I have a lot of work to do, but I’m determined to stick with it this time. I have a hard working husband and a truly wonderful 8-year old son that I need to be present for. I don’t want to spend the better part of my life in bed not feeling well. I’m currently taking a myriad of medications. I’m really hoping I’ll be able to get off some of the more toxic ones by using diet as a key factor. I’m an avid reader and love information, so please keep it coming. You are all wonderful and I’m so glad to get responses to my post. Thank you.
Hi Sick&Tired, if you don't mind me saying...it's not unusual to experience an upset stomach at first. Maybe the dose you started at was the full dose? If you did, try one capsule a day of the turmeric for 2 weeks and then two capsules, up to three daily. I've had that issue with several supplements and worked my way up. Now I don't have tummy issues when I take them. This was info provided by my doc and I was delighted that it worked!
Kate, sooooo happy to hear your motivation...just hoping and praying that you feel better ASAP! I'm actually doing a cleanse right now and just cutting out honey, eggs and nuts has made a difference. The usual fatigue has eased up as has the pain I often feel in my arms.
Kim, I hope you love the book! If you or anyone else has any questions, please let me know!
Oh, I also wanted to say that what is in our minds is VERY important! Prayer and meditation (especially mindfulness and heart-math) have been a huge part of getting me through bad days. My acupuncturist also has me doing qi gong (it's the mother to tai chi and feels so good). Everything I read of people healing from "uncurable" diseases states that they believed they would find a way to cure themselves. So although there are days where it is hard to believe that, we just can't stop.
My Acupuncturist also said that Quercetin is good for "inflammation due to an autoimmune response". I can't stomach tumeric either, but I have no problem with the Quercetin capsules. Tumeric and Ginger are so good, though. I so wish I could tolerate them. SS can dry up the protective mucousal layer in our digestive tract, so I think I've got that going on so it makes 'warm' herbs intolerable.
excellent question....I too have wondered the same. my opinion is our immune systems are turned on in a negative way, and the meds we take to turn off the "bad stuff" is why we take these meds. anything we can do for our bodies in a positive way, will only bring positive results, but with that said, I have an apt with my rheumy in October and that question is at the top of my list.
Casey! You are a beautiful inspiration. What you write is wise and most importantly you are living it. I agree to all especially our deeper connection to what is within. The only way to peace is through that connection, and living with an illness it keeps your heart open to the joy that life is.
I am feeling a surge of energy from reading your posts yesterday, which proves that the mind too can be an obstacle in our daily motivation.
Positive Feedback : I have a very sensitive tummy which must be as a result of SS so before I take any tabs etc I prepare my tummy for it and will eat something beforehand to assist it. Yesterday I had half a teaspoon Turmeric with a table spoon of chickpea hummus. I love hummus and the turmeric was tasteless with it. Quite delish! Success! :))
Quote: You can make positive deposits in your own economy every day by reading and listening to powerful, positive, life-changing content and by associating with encouraging and hope-building people. Zig Ziglar
Casey said:
Hi Sick&Tired, if you don't mind me saying...it's not unusual to experience an upset stomach at first. Maybe the dose you started at was the full dose? If you did, try one capsule a day of the turmeric for 2 weeks and then two capsules, up to three daily. I've had that issue with several supplements and worked my way up. Now I don't have tummy issues when I take them. This was info provided by my doc and I was delighted that it worked!
Kate, sooooo happy to hear your motivation...just hoping and praying that you feel better ASAP! I'm actually doing a cleanse right now and just cutting out honey, eggs and nuts has made a difference. The usual fatigue has eased up as has the pain I often feel in my arms.
Kim, I hope you love the book! If you or anyone else has any questions, please let me know!
Oh, I also wanted to say that what is in our minds is VERY important! Prayer and meditation (especially mindfulness and heart-math) have been a huge part of getting me through bad days. My acupuncturist also has me doing qi gong (it's the mother to tai chi and feels so good). Everything I read of people healing from "uncurable" diseases states that they believed they would find a way to cure themselves. So although there are days where it is hard to believe that, we just can't stop.
I’ve really enjoyed this discussion. Thank you all for your input. Much appreciated as always.
Thank you so much Kate!! Honestly, I just want to share any positive info I can that may help others. I am 32 and going back to graduate school next year to become a nutritionist because I want to help heal the body through nature's first medicine - food! Having pSS inspired me to make a big career and life change...thank goodness my hubby is super supportive! ;) I've had doctors brush me off - as I know many of us have - and earlier this year I thought my life was over I was so sick. But I started praying like I never had and found hope and strength in my faith to believe that what medical professionals said wasn't true. They just don't know better and sadly I think they get caught up in the system. So I hope that I can pay forward what I have learned through very good healers and spread hope...because having a chronic illness is not easy by any means and we need to be uplifted as much as possible, to have renewed hope and faith!