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Thread: Anyone else on Autoimmune Protocol? page 2

  1. #11
    Sundoggy's Avatar
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    Jammies - thank you so so so much. For some reason this last post of yours just made me want to cry! I think it's having someone understand so well. Like you, I think the answer for me may be a combination of diet and traditional drugs. Of course would like to be off those drugs permanently -- but right now it is more important to be able to walk, and hopefully return to the workforce (I'm now applying for a part time job after a year on disability).

    I thought Rituxan was the end of the line and my last drug to try. I don't know about the IL-1 and IL-6 inhibitors so I will research them ASAP. Interestingly, I had a 10 day period of almost near remission a couple of months ago, from both RA and neuropathy. It was amazing, for the first time since being sick I had real relief. We don't know if it was caused by the Rituxan (it was right at the point where the first Rituxan dose should have kicked in) or the fact that I was on bedrest from a fractured sacrum (caused by prednisone use!). But just having those ten days gave me hope. However, at that point, having already tried an autoimmune/anti-inflammatory diet (though not as strict as now), I was eating everything -- gluten, sugar, grains, dairy, nuts, nightshades... and I had almost no pain! This makes me wonder if some cases of autoimmune arthritis are responsive to diet, and others not? My dad tried various dietary changes with his RA but had no luck, back in the 70s and 80s. Is it possible my genetic strain of RA is not related to diet? Well, for now, despite no evidence to support it, I'm going to believe that diet is critical and continue following all of this super super strictly.

    You have given me great inspiration Jammies. Believe me, I would be thrilled to return to the kind of health you have, even if it's not perfect. Any improvement will be so welcome! And luckily, I do love this primal way of eating.

    BTW, just tried a new breakfast -- ground chicken with mushrooms, asparagus and onions -- yum! Also eating salmon for breakfast and chicken sausages. The trick I've discovered is to wait to eat bfast until 10 or 11 -- then I can stomach "regular" (not traditional breakfast) food.

    OK, not giving up here!!!
    : )

  2. #12
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    Quote Originally Posted by Guitar_grrrl View Post
    Hi, Sundoggy, nice to meet you. I'm dealing with MS. I'm not sure what the autoimmune protocol is, but I went Primal on March 14 of this year. So just 7 weeks into it, I've lost 8 lbs (I needed to - 15 to go...). I eliminated dairy, as well as all grains. I must say, my fatigue has improved, and my walking distance has improved slightly, as well.

    I'm taking Tysabri (Natalizumab) to keep my incidence of flares down (I haven't had one in 2 1/2 years), but my disability has been slowly, insidiously increasing. I also take Acetyl L-Carnitine, 1000 mg, 2x/day. AL-C gives our mitochondria something else to chew on besides glucose or fructose. Eating "Primal" helps or mitochondria, too. For spasticity and spasms, I take Baclofen, and then at night I also take 5 mg of Valium, alternating every other night with Cannabis.

    I'm looking forward to increased energy, and that's already happening. My digestion has never been better.
    Taking this path with you...
    Dear Guitar Grrl,

    Good to hear about your experience so far!

    If you haven't seen this incredible video about MS and a primal diet, check it out, Dr. Whals who has MS herself. But it sounds like you already understant the whole mitochondria thing.

    The Autoimmune Protocol can be found at Robb Wolf's site, but I'll put it for you here:

    Paleo For Autoimmunity

    Emerging research has made clear the link between Neolithic foods (grains, legumes and dairy) and autoimmune diseases such as Lupus, Rheumatoid Arthritis, Multiple Sclerosis and a host of other less well know conditions. Many people have found significant improvements in autoimmune disease by eliminating the Neolithic foods and building a diet around nutritious Paleo options. If you suffer from an autoimmune disease we highly recommend you start a Paleo diet and let us know what your results are. To give your body its best chance to heal we recommend that you initially limit the following foods:

    Eggs
    Tomatoes & eggplants
    Peppers including bell peppers and hot peppers
    Spices such as curries, paprika, and chili powder.
    Some of these otherwise Paleo-friendly foods have been shown to be problematic in individuals with autoimmune issues. We recommend you fully remove not only these foods but also all Neolithic foods (grains, breads, potatoes, beans and dairy) for at least a month to see if they pose a problem for you.

    Good luck with your health and I look forward to updates!

  3. #13
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    Quote Originally Posted by Guitar_grrrl View Post
    I also take Acetyl L-Carnitine, 1000 mg, 2x/day. AL-C gives our mitochondria something
    Yes- Acetyl-L-Carnitine combined with alpha-lipoic acid - that is supposed to be good for energy and neuropathy....

    Thanks guitar grrl - i couldn't think of it!!
    Using low lectin/nightshade free primal to control autoimmune arthritis. (And lost 50 lbs along the way )

    http://www.krispin.com/lectin.html

  4. #14
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    Does anyone have a list of good foods? I have MS too, and notice when I go "full primal" some of my symptoms are worse, but if I'm eating SADish, I'm soooo fatigued and short tempered. It's important to note that my "full Primal" would include a bunch of eggs with cheese and onions, peppers, and mushrooms for breakfast, a salad (with peppers and eggs) for lunch, and usually something else for supper, but tomatoes and red pepper were usually involved. Snacks are nuts, cheese, or hardboiled eggs. I don't know what to eat without nightshades, eggs, nuts, or dairy....
    I really need to get my weight under control, and since I don't take DMDs, I want to do everything I can to keep the MS from progressing. (And yes, I've seen the Wahls videos several times, and while it is somewhat primal, I don't know how I can choke down all those greens. And, it looks really...um, not fun? I know that sounds childish, but relegating myself to kale and low fat meats simply will not do it for me.)

  5. #15
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    Ooopps.... I was just about to post the Wahls video for you- but I see that is not necessary
    (You could try adding in some green smoothies to get some of her veggie requirement in, but I have yet to meet her requirement for veggies either)


    There is a link in my signature on lectins. Basically the autoimmune protocol is a primal diet but you don't eat:

    eggs
    dairy
    nightshades (tomato, peppers, eggplants, tomatillo, potatoes)
    nuts
    (Some people cut out coffee and chocolate right away as well)

    If you feel better then you can slowly add in one food type at a time to see if they are safe for you or not.

    Before trying this, I often found I felt worse when I ate "healthy". I am now convinced that was because I would always eat so many nightshades when I ate a healthy diet.

    No need to go low fat. In fact, a diet very high in saturated fat is best for me as far as inflammation. Don't forget to eat your offal too - tons of nutrients that you WILL miss out on if you eat only muscle meat, fruits, and veggies.

    Good luck!!
    Using low lectin/nightshade free primal to control autoimmune arthritis. (And lost 50 lbs along the way )

    http://www.krispin.com/lectin.html

  6. #16
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    Quote Originally Posted by Sundoggy View Post
    However, at that point, having already tried an autoimmune/anti-inflammatory diet (though not as strict as now), I was eating everything -- gluten, sugar, grains, dairy, nuts, nightshades... and I had almost no pain! This makes me wonder if some cases of autoimmune arthritis are responsive to diet, and others not? My dad tried various dietary changes with his RA but had no luck, back in the 70s and 80s. Is it possible my genetic strain of RA is not related to diet? Well, for now, despite no evidence to support it, I'm going to believe that diet is critical and continue following all of this super super strictly.

    BTW, just tried a new breakfast -- ground chicken with mushrooms, asparagus and onions -- yum! Also eating salmon for breakfast and chicken sausages. The trick I've discovered is to wait to eat bfast until 10 or 11 -- then I can stomach "regular" (not traditional breakfast) food.

    OK, not giving up here!!!
    : )
    I have to say that I agree it seems some people with autoimmune issues seem to respond very clearly to foods - even trace amounts, while others don't. But I think that even if there is no obvious connection between food and relapses, eating a really clean, healthy diet is a good way to support your body. For example, I have MS and my husband has psoriatic arthritis (very similar to rheumatoid arthritis). When he gets flare-ups, he's basically crippled and has extreme pain just walking from one room to another. We've tried every diet-related thing we can think of, and there seems to be no connection. We cut out grains, dairy, corn, legumes, nightshades, eggs... When he was eating 'the cleanest' he had the most pain. Then at times he'd go back to eating dairy or gluten to see if there was a reaction, and nada. For my MS, I cut out gluten, dairy, and legumes, and was eating lots of veggies and fruit and fish and grassfed meats...I haven't had any MS flares in almost 2 years, but I still have a crippling fatigue and when I cut out non-glutenous grains and increased my veggies and fruit, my intermittent IBS came back with a veangence...After reading The Fiber Menace, I've working on reducing my daily fiber (sorry, veggies and fruit!) and I'm taking a NAG supplement to help my body repair my digestive system, which seems to be working. I could go on and on...

    As for the breakfast issue, I tend to do what you do, or I IF and skip breakfast all together (now that I'm in the habit of doing this, eating when I first wake up is a little weird to me.) Sometimes I just have some hamburgers with sauteed zucchini and onion for breakfast, which doesn't seem weird anymore either.

    I also want to second the advice that this is indeed a marathon. I get frustrated. A lot. I often want to give up and eat crap. Occasionally I do - and then I dust myself off and get right back on the wagon, because even if my fatigue never seems to get better, or my IBS seems hopeless, it only takes one day of eating crappy food to show me how much worse I could be feeling.

  7. #17
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    Quote Originally Posted by BestBetter View Post
    I have to say that I agree it seems some people with autoimmune issues seem to respond very clearly to foods - even trace amounts, while others don't. But I think that even if there is no obvious connection between food and relapses, eating a really clean, healthy diet is a good way to support your body. For example, I have MS and my husband has psoriatic arthritis (very similar to rheumatoid arthritis). When he gets flare-ups, he's basically crippled and has extreme pain just walking from one room to another. We've tried every diet-related thing we can think of, and there seems to be no connection. We cut out grains, dairy, corn, legumes, nightshades, eggs... When he was eating 'the cleanest' he had the most pain. Then at times he'd go back to eating dairy or gluten to see if there was a reaction, and nada. For my MS, I cut out gluten, dairy, and legumes, and was eating lots of veggies and fruit and fish and grassfed meats...I haven't had any MS flares in almost 2 years, but I still have a crippling fatigue and when I cut out non-glutenous grains and increased my veggies and fruit, my intermittent IBS came back with a veangence...After reading The Fiber Menace, I've working on reducing my daily fiber (sorry, veggies and fruit!) and I'm taking a NAG supplement to help my body repair my digestive system, which seems to be working. I could go on and on...



    I also want to second the advice that this is indeed a marathon. I get frustrated. A lot. I often want to give up and eat crap. Occasionally I do - and then I dust myself off and get right back on the wagon, because even if my fatigue never seems to get better, or my IBS seems hopeless, it only takes one day of eating crappy food to show me how much worse I could be feeling.
    Sounds like you eat like I do. I'm not sure what NAG is...

    I saw Terry Wahl's TED talk, too. I love kale and other greens, but 9 cups?!? Maybe if I juice it... And, yes, this is definitely a marathon. One day at a time, and today seems like a pretty good day.

  8. #18
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    Hi Sundoggy, I am also on a paleo type diet for auto-immune disorders. I haven't been officially diagnosed with an auto-immune disease but I have chronic neuropathy, partial paralysis, numbness, hormonal disorders and exhaustion.

    Have you ever been tested for Lyme disease?? I've tested positive for Lyme disease through Igenix labs 3 times and currently treating for this using herbal remedies (following 6 months antibiotics). You said that you came down with this after a vacation and had multiple lesions show up. I truly believe this is a bacterial / viral / spirochete issue - not your immune system malfunctioning. Most auto-immune disease is caused by pathogens in the body and the fact you had lesions show up seem to point more to being infected with something rather than your body attacking itself for no reason. I would urge you to have the test done so you can treat it sooner than later if you do have it because it's very hard to get rid of the longer it sticks around.

    As for foods, I've found I'm very reactive to all night-shades, almost all spices including black pepper, fruit, grains, coconut and seeds and eggs.. I've only recently made the connection to spices, seeds and fruit which I was eating freely in the past never realizing they were worsening the severe neuropathy. I would stay away from any pre-packaged foods and eat organic as possible. I also take L-glutamine on an empty stomach in the morning for leaky gut. My leaky gut protocol is very extensive but I find the l-glutamine is probably the most important. Along with taking pro-biotics, digestive enzymes and possibly doing a heavy metal chelation protocol. (read up on Dr. Dietrich Klinghardt and Dr.Hyman's protocols) Even look into taking a heavy metal test?

    It's tough when there is no definitive answer and you're in pain but just trust that you will find an answer and will heal.

    Best of luck to you!

  9. #19
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    Quote Originally Posted by Guitar_grrrl View Post
    Sounds like you eat like I do. I'm not sure what NAG is...

    I saw Terry Wahl's TED talk, too. I love kale and other greens, but 9 cups?!? Maybe if I juice it... And, yes, this is definitely a marathon. One day at a time, and today seems like a pretty good day.

    Sorry, NAG is short for N-Acetyl-D-Glucosamine., which is used as a structural component of intestinal mucous secretions. My supplement has this in combination with L-Glutamine, an amino acid that is required by the cells in the intestinal tract. These supplements are suggested for people who are looking to improve leaky gut / digestive issues (a popular theory is that leaky gut is a key factor in autoimmune disorders).

    Have you read about the GAPS diet? It focuses on healing leaky gut, and has lots of really good scientific information on exactly what leaky gut is all about. All the info from Dr. McBride's book is on her website:


    http://www.gapsdiet.com/INTRODUCTION_DIET.html

    I tried the 9 cups of veggies/fruit, but my digestive system can't handle that much fiber. And after reading Fiber Menace, I'm actually a little confused as to how anyone can long term, but it really seemed to work for Dr. Wahls. I think it doesn't matter how many cups you're eating, as long as your overal diet is really wholesome - but that's my opinion.
    Last edited by BestBetter; 05-07-2012 at 04:36 PM.

  10. #20
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    Go on the GAPS diet. Your gut is compromised, leading to autoimmunity.

    (don't be scared of the source of this article. GAPS is not associated with any religion, it was created by a neurosurgeon)
    GAPS (Gut and Psychology Syndrome)

    Healing Rheumatoid Arthritis on GAPS Diet: Elli Sparks 01/11 by BethWiles | Blog Talk Radio
    Notebook of a Nutrition Nerd

    ‘THE FOOD YOU EAT CAN BE THE SAFEST AND MOST POWERFUL FORM OF MEDICINE OR THE SLOWEST RELEASING POISON' - Dr Ann Wigmore.

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