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Autoimmune disease? This is my experiment...

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  • #31
    Oh, Paleoforlupus, I feel your pain (heh, no pun intended)! My experience over the years with rheumatologists and doctors in general has left me cross-eyed with frustration.

    My experience has been that they seem both clueless, and brainwashed in conventional wisdom (I doubt any Ive seen even know what a Paleo diet really is). The doctors I have dealt with seem to have tunnel vision; this symptom = drug A, and then take drug B for the side-effects from drug A. You are so right that you have to be your own advocate to find solutions outside of the typical conventional wisdom most doctors are immersed in. It kind of breaks my heart to think of all the people that end up caught in an endless cycle of drugs, more drugs, and disease progression, because that was me for the couple of years before I was diagnosed, and first year after my diagnosis. I am more grateful than words can say that I found paleo/PB and stuck with it long enough for it to work! Seriously, several times a week, something Im doing will make me pause and think Wow. Thank-you for letting me find this, and thank-you for giving me my life back!

    Sadly, I somewhat understand your docs attitude when it comes to not suggesting Paleo to her patients. As a prime example, shortly after I found paleo, I emailed a video of a doc talking about paleo diets helping people with MS to a cousin of mine with MS (actually, my moms side of the family is riddled with autoimmune disease). She went paleo for a while, lost a lot of weight, thought her symptoms were improving a bit, but then went back to her old diet (and now shes very heavy again, and her MS continues to progress). Ive also run across folks over the years with various diseases (diabetes, Celiac) that say they dont want to give up xyz in their diet they actually prefer drugs, because its easier!

    Guess you hit a hot button for me, so Im going to get off my soap-box and go get dirty, sweaty and probably tick covered on a nice hike with my dogs. . .
    A ship in harbor is safe - but that is not what ships are for. ~John A. Shedd

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    • #32
      My login is going all wonky when I try to edit my post. . .

      I just wanted to add that my examples of people that prefer drugs to lifestyle changes are NOT a good excuse for you doc not offering the Paleo diet to all her patients. SOME patients would jump all over it and change their lives, which is better than those patient never having that choice!
      A ship in harbor is safe - but that is not what ships are for. ~John A. Shedd

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      • #33
        I posted a link last night, check it out. It was a video I found on Youtube that reviews a study done by a French Dr. using the Paleo diet to treat auto-immune disorders. Lupus was one of the ones mentioned, with a 100% success rate if I am not mistaken. It seems that diet is the best anti-inflammatory medicine you can take!

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        • #34
          Originally posted by Marymk View Post
          I posted a link last night, check it out. It was a video I found on Youtube that reviews a study done by a French Dr. using the Paleo diet to treat auto-immune disorders. Lupus was one of the ones mentioned, with a 100% success rate if I am not mistaken. It seems that diet is the best anti-inflammatory medicine you can take!
          @Marymk I've seen this, the results are quite amazing!
          Follow my journey: http://paleoforlupus.blogspot.com/

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          • #35
            PFL-- really great to see how well it's been helping!! I have thyroid/adrenal issues and had super high inflammation (my CR-P was crazy high). Eating strict with no grains and cutting way back on the dairy helped a lot, and you're right-- when you have symptoms that get exacerbated by grains or dairy it's MUCH easier to not consider "cheating". Because it's kind of like kicking yourself in the head!

            It upset me for a long time, too that not only did my old doc not recommend dietary changes, but when I suggested changes actually had the audacity to say "diet has nothing to do with it". Doh! There are way too many incompetent doctors out there. I do agree though that so many people won't make the change because it's too hard. But at least give us the option to decide that. At least then you know about it so when you start getting worse and feeling at the end of your rope, maybe it won't seem so hard.
            sigpic "Boy I got vision and the rest of the world is wearing bifocals" - Butch Cassidy and the Sundance Kid

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            • #36
              My 5 weeks update (I'm a little short on time today so I just copied this from my blog):

              5 weeks, 5 weeks, 5 weeks!!!!!!! What a difference 5 short weeks can make! It is phenomenal how much different I feel from March 7, when I started this endeavor. I seriously had major doubts, after all, if being a vegan (the most healthy diet according to CW) for 7 months didn't do much what on earth was eating mostly fat (and saturated fat at that) going to possibly do? You couldn't convince me that this much change was possible in such a short period of time if it wasn't actually happening to me!

              So, here's my weekly update:

              Lupus symptoms - Absolutely non-existent! In the past week, I have not had one ache or pain. No stiffness, no swelling, no pain at night, no fatigue, nada, zip - wow!! I cut my plaquinil dose in half (it's been 2 days) and still no pain and stiffness. I. Am. Going. To. Be. In. Remission. Soon.....

              Overall well-being - I don't know if I even need to respond. I have never felt better (except maybe right after my 2 girls were born). I'm energetic, pain-free, clear-headed. Some people are starting to read my blog and are getting inspired to help themselves and others close to them. This makes me feel so good! I am becoming so passionate about this! I wish I could just convince every person with lupus and RA (and any other autoimmune disease) to just give this WOE a chance - 30 days and you'll be hooked on being healthy!

              Weight loss/Measurements - Screw this!! I've been getting a little obsessed over the weight loss and my measurements. Both parameter numbers have been slowly getting smaller but someone over on the MDA forum kicked my butt a little and got me to refocus on getting well, after all, this is why I started this. The weight loss is such a nice side effect but thank you Shat!!

              Exercise - I am still following the PBF routine and walking a lot. I'm also part of a running group and I'm trying to work myself up to a 5K. It is slow going and I'm not really sure I like it but I'm going to stick with it a little longer to see if that changes. I think I should be able to run 3 measly miles without having to walk. So that's my next goal. Yes me, a 5K, WTF! Seriously, this was not even a remote possibility 2 months ago!

              Okay, I'm a little crazy right now! I am so passionate about this WOE because it has completely changed how I physically function on a daily basis and that in turn, has completely changed my mentality. I'm a little bummed right now, I actually just got kicked off of a lupus website forum - I'm banned for life for raving about this WOE - they called me a snake oil salesman! I've messaged the administrators, telling them I'm not profiting or making any money from this but I haven't heard back from them. I guess I'm coming on a little strong! I'm sure I'll relax once the feeling of waking up and moving through the day painfree becomes routine (4 weeks and I'm still in shock every morning when I wake up!).
              Follow my journey: http://paleoforlupus.blogspot.com/

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              • #37
                Yay! It sounds like you are doing great! I am so glad you are feeling better! I love hearing success stories!
                Karin

                A joyful heart is good medicine

                He is no fool who gives what he cannot keep to gain what he cannot lose. - Jim Elliot

                Mmmmm. Real food is good.

                My Journal: http://www.marksdailyapple.com/forum/thread29685.html

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                • #38
                  Originally posted by paleoforlupus View Post
                  I'm a little bummed right now, I actually just got kicked off of a lupus website forum - I'm banned for life for raving about this WOE - they called me a snake oil salesman! I've messaged the administrators, telling them I'm not profiting or making any money from this but I haven't heard back from them. I guess I'm coming on a little strong! I'm sure I'll relax once the feeling of waking up and moving through the day painfree becomes routine (4 weeks and I'm still in shock every morning when I wake up!).
                  LOL! You troublemaker! Hopefully the admins will allow you back... some people might be willing to try PB/paleo. It's basically free...

                  Glad to see that you are continuing to feel better!
                  Jen, former Midwesterner, living in the middle of nowhere.

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                  • #39
                    Primal hope

                    Please keep us updated! One of my dearest friends also has lupus. She has tried many alternative as well as conventional treatments. Overall she is doing well but the slightest stress in her life can cause a flare.
                    I too have always heard that the acidity of meats causes inflamation. I was diagnosed with Fibromyalgia when I was 16 and have spent the last 14 years managing it without meds. I was always athletic/active and maintained a healthy body weight. The entire 14 years was spent on a low-fat diet that kept the pain within tolerable levels most of the time. I tried a vegetarian diet for a few years and gained about 10 lbs (which is significant on my 5'4" frame) and lost energy. In the 2 years since I have struggled to loose that weight and increase my energy levels.
                    I have been primal for a month now and I am feeling better. My energy level improved within the first week. 5 pounds came off during weeks 2 & 3. Despite drastic shifts in the weather, thanks to spring, (a usual trigger) my pain levels are better. There is still pain but a lot of the muscle knots are loosening and I am hopeful that painfree days are ahead.

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                    • #40
                      Wow. This is very encouraging! I just put a short introduction of myself in the "Newbie" section. I was diagnosed with SLE also, among other things. I just started PB today.

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                      • #41
                        Congrats! Do send your story to Mark for the blog, if you haven't already...
                        Ancestral Nutrition Coaching
                        Pregnancy Nutrition Coaching
                        Primal Pregnancy Nutrition Article

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                        • #42
                          Sunlight one of the worst triggers for LUPUS

                          Hi there, new here and this caught my eye...I was diagnosed with Lupus in 1990..... and Sunlight, ultra violet light actually triggers lupus ...the sun on the skin is what starts ANA production with causes the body to go into overdrive...the problem with lupus is that the bodies defense mechanisms go into over drive with certain triggers and sunlight is one of them... Getting Vitamin D from a pill is a good way to get it or wear a 50-70 sun screen...

                          I was finally diagnosed after we had a pool put in ...because I was outside in the sun for hours... prior to that I had moderate sun exposure but it wasn't enough for my blood test to come back positive.

                          hope this help!




                          Originally posted by Grizz View Post
                          PaleoLupus,

                          You are severely Vitamin D3 deficient. Lupus and other autoimmune diseases are caused by Vitamin D3 deficiency. You need to take 10,000 IU Daily of Vitamin D3 Geltabs.

                          See my Vitamin D3 Report below for details.

                          Grizz

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                          • #43
                            Paleoforlupus, I'm new to Marks Daily Apple and I read through this thread because I recently started this diet for lupus-relief. Are you still on the diet?? How has your progress been? How are you feeling now, a year after you started the diet?

                            I have SLE and being on this diet for 2 weeks has given me significant improvement. It would great to hear from you!

                            Yvonne L

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                            • #44
                              Originally posted by Marymk View Post
                              I posted a link last night, check it out. It was a video I found on Youtube that reviews a study done by a French Dr. using the Paleo diet to treat auto-immune disorders. Lupus was one of the ones mentioned, with a 100% success rate if I am not mistaken. It seems that diet is the best anti-inflammatory medicine you can take!
                              Do you have the url of the youtube video?

                              Comment

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