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Autoimmune Paleo (AIP) Protocol for LEMS
Prior to my LEMS diagnosis in the fall of 2019, I was diagnosed with a number of other autoimmune diseases including Celiacs disease, Dercum’s disease (multiple painful angiolipomas in my hips – think sitting on gravel!), Raynaud’s disease, and Rosacea (jury is still out on whether that is truly an autoimmune disease). While I had been symptomatic on and off for years beginning in 2003 my care team changed several times as we made several moves or changes in who was in network, making it difficult to diagnose. My LEMS flare ups last months and always begin with chest pain when walking up inclines or stairs which is then followed by heaviness in my legs, tingling down my more affected leg and feeling off-balanced.
During this recent flare, I was fortunate to have the same care team as I had during my very large flare up of 2016 that left me unable to walk (We now know this was a result of beta blockers for the chest pain). My neurologist joked that he was no smarter than that time but had an idea that perhaps it was LEMS. He ordered a 5 day treatment of IVIG therapy while we waited on VGCC antibody results. I was amazed after the ivig therapy that I felt energized and a pep in my step! When bloodwork (along with VGCC results) confirmed LEMS, he ordered monthly ivig therapy. He is opposed to medications that are available for LEMS as I have a seizure history and he was concerned about the risks and side effects. Insurance denied his request and I was desperate to research and figure out what I could do on my own. I read so much conflicting information about diets and what to eat that I ended up fasting for 48 hours because I couldn’t figure out what was safe to eat. It was during that time that I came across the Autoimmune Paleo Protocol (AIP). I watched Dr. Terry Wahls Ted Talk. Her story was amazing!! She, along with others, feel that nutritional changes CAN reverse autoimmune diseases. I ended up binge watching a number of Ted Talks related to nutrition and changing the course of diseases. Although it seems too good to be true, I was desperate to do all I could to make a change.
I visited my hematologist for a work-up following the LEMS diagnosis to make sure there was no underlying cancer – which would have been a surprise since I had been symptomatic so long! He fully supported the AIP protocol and said that it is a very strict diet and hard to follow but when patients follow it strictly, he has seen amazing results! He had me stop daily aspirin I had been taking post Deep Vein Thrombosis and Pulmonary Embolism and also had me stop long term use of doxycycline I was taking for Rosacea.
I went cold turkey into the elimination diet which not only eliminates foods that cause inflammation but also eliminates exposure to toxins (avoiding storing food in plastic, never use the microwave, avoid non-stick coatings, choose health products that are http://www.ewg.org compliant) and elimination of medications that can contribute to diseases such as NSAIDs and other unnecessary medications. The focus of your dietary intake should be on nutrient dense foods and avoiding all coffee, alcohol, nuts, seeds, legumes (even green beans!), nightshades, eggs, grains (even gluten free ones), processed vegetable oils, processed food chemicals, sugar, and sugar substitutes. So what in the world do I eat? You can eat meat, fish, poultry, all other veggies except nightshades, and fruits. For the best information on AIP online, I recommend Dr. Sarah Ballatyne (http://www.thepaleomom.com) and Mickey Trescott and Angie Alt (http://www.autoimmunewellness.com).
I have followed this since the middle of November. The first change I noticed was in my gut. I must say I have never felt such a sense of peace in my gut before! I also have felt less of the deep bone aches and muscle aches. More significantly, I am able to walk up the stairs of my two story home without feeling like I need to pull myself up. I am also now able to walk up the small hill in our subdivision without feeling chest pain! I continue to work full time as an itinerant teacher (going between schools to serve students 1:1) and have felt my stamina return. I am sleeping better and although I get tired in the evenings, I am able to prepare meals for my family, serve on two non-profit boards and run my small business. I had been fearful I would have to give up some of my commitments.
Just before Christmas, I received a letter from my insurance company that after a peer to peer review with my neurologist, ivig was deemed medically necessary and monthly ivig was approved. It is my hope that the combination of the AIP diet and ivig will not only stop the progression but possibly reverse the symptoms! Although I’m certainly no expert and have followed the AIP protocol for just 2 months, I’m happy to answer any questions or point you to helpful resources I’ve found! 🙂
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6 Replies
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Well said Carmen, thank you!
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Ditto what Joe said, Carmen!
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That’s an amazing story Carmen!
I’m so glad your neurologist recognized that you couldn’t take either of the amifampridine meds due to your seizures. They are very strong and I have recently heard of a patient who was hospitalized for over a week due to multiple seizures (he has epilepsy and had been taking one of the products.)IVIG is simply a miracle product for me in regards to managing my LEMS. It stops the antibody attack. It’s tough on a monthly schedule with working full time, I’m sure; but I just last week starting receiving immunoglobulin G subcutaneously, at home! Hizentra is indicated for CIDP, which is the first autoimmune neuromuscular disease indication. Look for my column this week for more info! It may be something you can transition to in order to make it easier to receive the miraculous “liquid gold” and not have the side effects interfere with your life so much.
As for you AIP protocol….OMG……I’d have such a hard time cutting coffee!! I will look into that more, you definitely make a good case! Being single and on disability right now, my grocery budget is small and it’s so unfortunate that eating super healthy is super expensive. Also, I use an NSAID to control my psoraitic arthritis, without it my hands are falling apart and I can’t type! 😉
Thanks so much for sharing your story! I’m sure you will get lots of questions!
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Thank you Joe, Crissy, and Dawn!
Dawn, I’m anxious to hear about the subcutaneous version! Do you have to stick yourself?? That may be a deal breaker for me! I used to have to give myself allergy shots and finally stopped as I had such a hard time getting up the will to stick myself! But I DO like the idea of it taking less time and fitting more easily into my busy schedule. Right now I’m just so grateful for the ivig and hope I feel the same pep in my step I felt after the October infusion.
As for the coffee I felt the same way! I am a total coffee addict! It was rough at first as I thought I had to cut out caffeine – but I later realized the coffee bean is the issue more than cafffeine. I now have a green matcha every morning with coconut milk, a little raw honey, collagen peptides and MCT oil. 🙂
I totally understand about trying to keep a budget! The AIP protocol recommends organic and free range meats. I must say I don’t follow that as it is so expensive. I do try my best to get the organic vegetables and fruits that are identified as the dirty dozen. Most items I buy are availalbe at Walmart or Costco (I’m a frugal girl) but some items are definitely more expenses – particularly those for baking – like tiger nut flour and coconut manna. I get those because I found a Christmas cookie recipe I LOVE and it makes following the diet easy! Doesn’t help with any weight loss efforts but super yummy! 🙂 I found a number of recipes that are tasty and I’m surprised I’m not cravy some of the foods I’ve eliminated. I think the hardest part to staying on the “diet” is cooking from scratch. I feel like a prairie girl these days! ha! But desperate times call for desperate measures and I figure I can’t go wrong eating healthy foods. 🙂
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Carmen,
Yes, you do need to stick yourself with the SubQ method but seriously, the needles are teeny tiny. I didn’t feel some of them. Just as with my pin prick testing for LEMS, one side of my body felt the needles more than the other. However, the pain compared to missed IVs, blood draws, and blown veins is exceedingly minimal. I plan on doing all of my own needles tomorrow when my nurse is here for this week’s infusion.
Some shots definitely hurt more than others. I was on Enbrel for a short time for my psoriatic arthritis. This girl who is afraid of needles made it through that, I can make it through the tiny SubQ needles!!
I am documenting time, energy and life flexibility differences, as well as side effects with SubQ and will be writing a follow up once I have a few more weeks behind me! So far, the flexibility of not having a huge chunk of days in a row automatically blocked out of my calendar has literally made me giddy with happiness. I’ve also found more energy to do things at night- last night I went to a live theatre production and stayed up for an hour after I got home late- completely atypical for me!
We have a Walmart in Maine for cheaper groceries; but unfortunately we are at the northernmost i95 corridor, so, the veggies and healthy food isn’t even close to “fresh tasting.” I shop at grocery stores that utilize as much Maine produce as possible. Winters in Maine are tough for veggie lovers. Thanks for the great budget minded ideas for the AIP protocol, though!
Still loving my coffee, though 😉
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Dawn, I’m anxious to hear more about it and if you have negative side effects. I ended up gettting a monster migraine yesterday following the ivig. I had to cave in and take Excedrin. I’m so deflated as I know my doctor wanted me to avoid the NSAIDs as he felt they contribute to my muscle weekness. It was for that reason that I had tried my best to manage with the oils vs Benadryl and Motrin. I had to make the decision that I’d rather have muscle weakness than the crushing headache! I’d love to know if you are free of migraine side effect with the subQ. Or do you still take Benadryl and Motrin to prevent?? I feel it’s a catch 22 and I can’t win. I REALLY don’t want this to be a monthly pattern or experience! Ugh!
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