Home » Uncategorized » At War with Myself: My CIDP Story and Healing Naturally

At War with Myself: My CIDP Story and Healing Naturally

Stricken overnight with pain and paralysis, my world was turned upside down by a disease I never knew I had. This is my story and how I’m using food not to just live with CIDP, but thrive.

Watch the video about my healing journey here.

March 2019

We were heading to dinner with friends and I was doing my hair–but with great effort. My arms were having a hard time reaching up to my head. My elbows felt like they had 50 pound weights on them.

I thought I was just tired.

I had a lot on my plate as usual–I’d just finished two days of meetings with the National Beef Checkoff and was busy planning my first cross-country food blogging conference plus the normal mom things, farm things and life things.

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    The next day

    That was a Friday night. By Saturday afternoon I couldn’t lift three plates to put them in the upper kitchen cabinets. I thought I must have strained a muscle. There was a burning soreness at the base of my neck. No mind. I had YouTube video to make–there was a deadline. I pushed on but by that night I couldn’t lift my right arm more than 45 degrees from my body. I had to prop it on the shower wall with my good arm to wash.

    Sunday

    Another 24 hours and I’m crumpled and crying. My whole body was weak and I felt sick and dizzy but didn’t know why. I didn’t know how to explain it. My feet and legs burned like they were on fire but tingled at the same time and I could barely get dressed. I cried on my husband and then wiped my tears and went out to teach Sunday School. We’re suck it up kind of people.

    Held hostage

    Over the course of the next few weeks I’d find myself gripped by a fatigue I’ve never experienced. Barely able to walk much further than the bathroom to the couch, I developed a severe pain on my left side just below my ribs and the pain and weakness worked its way up my body–first in my feet then to my calves, thighs and hips.

    My ankles would collapse in causing me to fall. My soles of my feet went completely numb and gradually, my hands and arms progressed to the point I needed help from my teenage daughter to button my shirts and tie my shoes. My son would push the button on my battery operated toothbrush for me. I could barely hold it.

    I prayed. I cried. I prepared for it to reach my diaphragm and take my breath. I wrote the goodbye letters to everyone I loved in case I woke up totally paralyzed.

    I was a prisoner to an unnamed enemy, and held hostage by fear.

    Diagnosed

    Life went on this way until I saw my family doctor in May–yes, May. Almost 7 weeks after the symptoms began. This led to urgent neurology appointments, and a spinal tap that left me deaf, bedfast and vomiting for 17 days.

    I walked with a cane, and needed a walker but refused to give in. I spent most of the summer sleeping on the porch swing.

    Finally a diagnosis of CIDP came in September. Chronic Inflammatory Demyelinating Polyneuropathy (CIDP): a progressive, degenerative autoimmune disease that strips the myelin (insulation) from spinal nerves triggering numbness, weakness, and paralysis.

    CIDP is a semi-rare chronic form of Guillain-Barre Syndrome and in my case was triggered by a Hepatitis A vaccine I had gotten about four weeks earlier. But I had the information I needed: my enemy was inflammatory and autoimmune and that was what I needed to know to fight back.

    Fighting back my way

    Doctors appointments were months apart with no offers of medication or treatment. This left plenty of time to not only feel totally abandoned by modern medicine but to also try to find my way around this disease on my terms. I consulted my naturopath who started supplements, I discovered this story, and changed my diet based on the teachings of Carrie Vitt at Delicously Organic. Week by week I started to see small improvements–I could grocery shop without crying in my car and blow dry my hair without falling down. Those were good things.

    After a visit to our university medical center and a run in with some pretty unprofessional medical staff in December 2019, I realized the two treatments for my disease were not going to be options for me. I had made great improvements since March and though I wasn’t cured I also wasn’t progressing–and that was a good sign. I decided to forego the risky band-aid treatments and fight the cause of my illness at its source.

    Update: 3/21 I tried subcutaneous IG in the summer of 2020 and it made me worse. Treatments were stopped. And the doctors recommended I “wing it” at home alone. They signed off on my case and offered me no additional help. Abandoned again.

    Changes and hard work

    Since my illness, I’ve become shockingly aware of the impact autoimmune diseases have on so many of us. And honestly it makes me fighting mad that so many factors can work together to make so many of us totally miserable. But I believe that there are ways to make each day better.

    Diet

    I have radically altered my diet. Even more than the recipes you see on this site–I’m starting an autoimmune protocol–a plan that removes a variety of foods including gluten, dairy, eggs, grains and sugar to calm inflammation and ease auto immune symptoms. It’s been used in a variety of clinical research studies and shows a lot of promise but the results take time. I believe food can be powerful medicine and that this approach is a powerful weapon. We don’t have to live with the answer that there’s nothing we can do.

    Update 3/21: I tried AIP and was kicked out of the coaching program I was in. The diet was amazingly restrictive and left me more stressed. Cashews are not cheese. Cauliflower is not rice. And not everyone tolerates 4 gallons of coconut a day. I felt deprived and lonely and have moved to a different method of treatment. See below. I hate the AIP protocol.

    Toxins

    I’ve been working on this one for a while but removing toxins from the environment is really important. I’ve taken out all synthetic cleaning products, dish soap, and personal care products from our home and replaced them with natural alternatives.

    Sleep and Stress

    I’m working on prioritizing sleep–which isn’t hard when you’re exhausted most of the time–but sleep is important for healing and I strive for 8 hours each night. I’ve also reduced stress as much as I can, and try to get fresh air and sunshine daily.

    Hope beyond the band aid

    If you’re battling with CIDP or any other autoimmune disease please know that there are options beyond band aid medications. I’d always want you to follow the guidance of your doctor but also be your own advocate and do what feels right for you. If what you’re doing isn’t working–try something else.

    Diet update 3/21

    In November 2020 I started the GAPS diet and work with Biodynamic Wellness in California. The first practitioners to tell me why I had CIDP that made sense, (allopathic doctors say they don’t know what causes any autoimmune disease) the nurse in me felt like their reasoning was logical.

    The treatment is slower than a turtle in peanut butter, but I am making progress. My diet is rich in good fats, raw dairy, eggs, red meats, meat stock, and no processed food. I’d encourage you to contact Biodynamic for more assistance and read the blue GAPS book by Dr. Natasha Campbell-McBride.

    Diet and Progress Update 7/21

    Amazing. Wonderful. Blessed. That’s what I have to say. It has taken about 8 months on the GAPS diet and with the help of my nutritional therapist to really feel like I’m getting in front of this disease, but the changes come monthly now.

    One of the first things I got back were my hands. Totally able to sign my name normally when I could barely hold a pen before. Oh the joy of working a button again!

    I kept track of my ability to sign my name. In January I could barely hold a pen.
    • From there, I saw one paralyzed toe wiggle a bit, then 6 weeks later a second one has joined in.
    • I can sit out in the heat and manage to still walk without feeling like I’m in a giant flare.
    • My drop foot is almost entirely gone and after 18 months in a brace, it’s off.
    • I’m grocery shopping two large stores alone again! I love this one. 😉
    • I took a shower without a stool or assistive device.
    • I took my first walk in 2 1/2 years. It was slow, but we did it.
    • Muscle spasms, twitches, and “zaps” are greatly reduced if not gone
    • Balance is greatly improved
    • Hip strength increases monthly. I can climb stairs with both legs.
    • My hair is growing back at an alarming rate! (See image below)

    Progress Update 2/22

    Doing great over here. I’ve gained more strength in my legs and can walk at pretty much a normal pace through stores and have the stamina to go and do much of what I choose. I have been able to pick up some light farm tasks again but still need to be careful I don’t overwork a healing system even though I’d love to.

    I continue to follow my diet and my NTP who I work with helped me uncover toxic levels of copper in my system so we are just starting a protocol to remove those. I’m excited to see how my body adjusts further to the elimination of those metals.

    Diet is the same. Occasionally a potato chip sneaks in but I continue to focus on blood sugar management, keeping my carbs low and non-starchy and getting in plenty of fats and protein along with fermented foods at each meal. I still drink meat stock several times a week and more often if I feel “flared up”.

    I still have toes that don’t move normally but I have very good balance and less neuropathy all the time. I still have numb patches below the knees, and an occasional tremor in my hands.

    There’s still so much to go, but so much has happened. I am not progressing, I don’t take any steroids, IVIG, or plasmapheresis. It can be done and I wish you wellness on your journey.

    Progress Update 9/22

    Still no progression though the occasional and dramatic flare that last a week or two. These seem to be more and more layers of issues in my body working to heal because every time they calm, I’m better than I was before.
    I keep my diet the same, following what I call an “adapted GAPS” or “Nourishing Traditions” diet. Sally Fallon knows everything.

    I’m able to skip now but not quite run. I’m starting to lightly exercise again and I’m just happy to be alive!

    In Health,

    Rachel

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    25 Comments

    1. Hi David, Hi Rachel
      Hope you are doing well.
      I’m so happy that you and are getting well.
      Actually my CIDP was recognized about 8 month ago after a surgery on my nose. At first it was a simple neuropathy, but after my surgery it severely attacked and puts me in a wheelchair and hospital frequently, due of which I was intubated for about 3 weeks.since then I couldn’t walk and my cidp relapses every other week. I would get IVIG, then I’m ok for about one week then it relapses and then I would get IVIG. Apart from IVIG and Prednisone, I’m getting cyclophosphamide every month (four dosage untill now), but still my cidp doesn’t desire to calm down, so I have to get IVIG every other week. If I don’t get IVIG, my cidp would progress and I would lose all my power even my respiratory system. Now, I would like to start your diet that you did when your cidp relapses a lot. I would really appreciate if you let me know more about your diet.
      Thanks
      Arman

    2. Hi! So happy to come across your blog. You say “The first practitioners to tell me why I had CIDP that made sense”. I am wondering if you can recommend any reading on this? My husband has CIDP since 2014 and has made lots of progress but continues to have foot drop and limited fine motor skills in his hands. I know we need to make diet changes but I want to be able to fully explain it to him so he will be on board. He’s been through so much and has PTSD from the hospitals and nursing homes and dying and such, so we need to take it easy with changes. Thanks for any info

      1. Hi Sophie, I’m so sorry you are all struggling with CIDP. As for reading, I might be able to dig something up but it won’t be specific to CIDP because hardly anyone is looking at this disease for natural medicine research. That said, it won’t matter as long as you focus on autoimmune disease in general. The base reasons for all autoimmunity are the same base reasons for CIDP. My practitioners focused on how my body was storing its toxins. Something has to cause the body to stop recognizing its own tissue as normal and start seeing it as foreign. That comes from a variety of toxins–metals, bacteria, viruses, chemicals, etc. that are deposited in the body. In a CIDP case, the body stores it in myelin which isn’t surprising because we know the body likes to store toxins in fat–somewhere it thinks it’s safe–and myelin is about 30% cholesterol. This article explores many toxins fat can store https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6101675/ though I’m sure this list isn’t exhaustive. This one gives a bit more information: https://pubmed.ncbi.nlm.nih.gov/12505286/. One thing is sure: you remove your toxins and triggers you remove the symptoms. I no longer have foot drop and have full use of my fingers and fine motor skills. IVIG is fine on one level as it surpresses symptoms but it does not remove toxins nor treat the root of the problem. –Rachel

    3. Reading your story made me relive the beginning stages of CIDP. Things you mention like “pick up plates” and realizing at first they were too heavy, is what happens to most. I have received “band-aid” treatments like you mention (IVIG, Plasmapheresis, Prednisone) and so my recovery has been faster then what you mention. I obtained my CIDP gift by contracting covid and 10 days after covid symptoms subsided CIDP ones began. I too waited too long to get diagnosed (10 weeks before going to hospital) and was nearly completely paralyzed. It was a scary time, but my mom finally said “I’m driving down to you and taking you to the hospital”. Now 13 months later I can walk, drive, work and even stand on my tippy toes almost to a normal degree. I no longer receive IVIG and and almost completely tampered off prednisone. For me Prednisone was a difference maker. I had almost no negative side effects and it sped up my recovery so much then before taking it, this of course is not the case for everyone. IVIG was great as well, but with far more side effects (some really harsh ones). The thing I have realized is diet it EVERYTHING. Before changing my diet my recovery and relapsing was normal. I would get slightly better and then symptoms would start and I would get IVIG which would halt those but cause side effects, then repeat. I thought I would be on IVIG forever before changing my diet. I no longer eat refined sugars, heavy carbs, etc. I eat a plant rich diet with salmon weekly and certain fruits for snacks. I might have a Taki (the chips) or 2 or 3 twice a month but it’s in very much moderation. I really believe that by the end of 2022 I will be able to jog again with how well my recovery is going. I feel physically healthier mentally and physically since changing my diet. It was not easy though, I love to snack on junk food before. I miss ice cream, chips in abundance, pop tarts, coffee with lots of sugar or a sugary coffee like drink, etc. I never imagined eating how I do now in my life. I look better then ever since my diet is so clean and would not risk my recovery for ANY junk food. I still see a neuromuscular neurologist regularly and he is always surprised as my improvements. He tells me my prognosis is better then most because of how well my nerves seem to be healing. I have EMG’s done from time to time and these are good at tracking the nerve healing progress. If you have good insurance then I would recommend getting them every few months. They will let you know exactly how well you are doing and having as much information as possible helps. Thank you for your story and it’s always a nice feeling that I am not alone, albeit you are also stuck with this crummy disease. Everyones journey to healing is different and I wish you the best Rachel. I am sorry you had to go through this same scary journey. Mine ended my marriage of 6 years, but it was bound to happen. My wife didn’t believe me that I was sick and actually accused me many times of faking it until I was diagnosed. She did nothing to help me before diagnosis, but would scream at me that I was a “P*ssy” and to stop pretending like it was that bad. She was awful and completely unsupportive. There are two sides to every story though and I think her frustrations stemmed from fear as she was a foreigner living in America without her family and a sick husband. The whole experience has been humbling to say the least, but has taught me what is important in life. I am more motivated then every to get better and achieve more things in life i’ve dreamed of. Best of luck and sorry for the typo’s and poor grammar, it’s never been my strong suit.

      1. Hi David, thanks for your thoughts. I’m glad you’re getting better! It certainly is a tough road and I’m so sorry you’ve had struggles. I hope you continue to improve.

        I personally have no desire to go in for regular EMG’s. I don’t even have a doctor overseeing my care at this point since they all gave up on me and told me to “just wing it” at home. So I can certainly feel my nerves doing their thing without having to be shocked. The one and only EMG I had, they shocked me for four hours trying to get a normal result. It was really annoying.

        I totally believe that CIDP, along with most autoimmune diseases can be put into complete remission and I know you can get there too. All the best to you! –Rachel

      2. Hi David, Hi Rachel
        Hope you are doing well.
        I’m so happy that you and are getting well.
        Actually my CIDP was recognized about 8 month ago after a surgery on my nose. At first it was a simple neuropathy, but after my surgery it severely attacked and puts me in a wheelchair and hospital frequently, due of which I was intubated for about 3 weeks.since then I couldn’t walk and my cidp relapses every other week. I would get IVIG, then I’m ok for about one week then it relapses and then I would get IVIG. Apart from IVIG and Prednisone, I’m getting cyclophosphamide every month (four dosage untill now), but still my cidp doesn’t desire to calm down, so I have to get IVIG every other week. If I don’t get IVIG, my cidp would progress and I would lose all my power even my respiratory system. Now, I would like to start your diet that you did when your cidp relapses a lot. I would really appreciate if you let me know more about your diet.
        Thanks
        Arman

      3. Hi Arman, I’m so sorry you are struggling with the ugly face of this disease and how you have had to fight for your health. IVIG is a temporary fix unfortunately–you’ll keep relapsing as long as the root causes go untreated. I highly recommend checking out the GAPS book that is linked in my post here and getting started with the diet it outlines. I live on that diet and don’t use it just when I have a small flare. I don’t have any relapses at all and I don’t have any disease progression. Only slow steady healing and reversal. I know you can do it! Check out the book. 🙂 –Rachel

    4. Rachel, Words cannot express the sympathy I have for you for the suffering you have experienced and endured. I Have experienced much of what you describe, myself, but mine was caused by Statin Drugs and experiencing a Tick borne disease at the same time. I still suffer joint pain along with
      muscle pain and weakness, constant fatigue and arthritis from this. It has been many years and I still have to take prescription pain med every four hours to make the pain manageable. I am so sincerely happy that you have been successful in alleviating your symptoms to the degree you have. I am going to study the GAPS Diet and if it is possible for me to try it here, I will give it a try and hope for similar success. God bless you Rachel and thank you for sharing your story. Sincerely, Franklin smith

      1. Oh Franklin, I’m so sorry. We can certainly all sympathize with these struggles. They are life changing. Don’t be scared off with your studies. The diet isn’t nearly as awful as it may seem. I do “full GAPS” meaning I eat everything that’s allowed on the diet and never did the strict elimination phases. I might have gotten better faster if I had, but it was all I could mentally and physically manage and now 10 months in, I can say it was the right choice for me. We are all different, but I have found this modified paleo diet to be one that I can live on and not think of as a “diet”. Raw and cultured dairy, meats, vegetables, fruit, eggs. It still leave so much to be enjoyed. I wish you health. Please let me know how I can help you further. –Rachel

    5. I am so thankful for what God has done for you!! He is a miracle worker! I have a testimony as well of what I have gone through as well after receiving an injection at the doctor’s office.
      I am so happy for you and your family. I prayed for you and I am so thankful!! You are one of my favorite youtubers!! 😌🙏
      God Bless you always! He is our Shepherd! Keep up the great work!!

      Sincerely,
      Michelle😌😉

      1. Oh thank you so much Michelle. 🙂 I’m so grateful to be alive and I wait on a total healing one day. And I’m so glad you enjoy the YouTube channel. I’m working more steadily now thankfully so videos will be coming out every week. All the best to you! –Rachel

    6. Hello: my name is Kathleen Kriebel and I was diagnosed with GBS/CIDP in September 2019 that I contracted 2 weeks after receiving the FluBlok Quad Flu Vaccine. I was in the hospital 2 times at the beginning of this journey was not able to walk at all for a month, then graduated to a walker which I used until July 2020 and now I use a cane. I can’t walk far but at least I am now upright with only a cane. Aside from some increase in strength in my muscles, all other parts of this autoimmune disease remain with me. I was so glad to find your article because I can understand and relate to what you have been through but also because I have started a anti-inflammatory diet just this week hoping that I will see some positive results. I would love to hear from you about how long you have been on your diet, etc. Thank you – Kathleen Kriebel

      1. Hi Kathleen–so nice to meet you and I am so sorry for your diagnosis. I also use a cane as needed and I’m happy to update you. Six months ago my doctors threw up their hands and said they could no longer help me and they sent me home with no treatment and told me to only come back if I was dying. I have no plans to ever go back if the good Lord will help me. IVIG makes me worse and I have refused plasmapheresis due to the complications. They say they’ve never seen a CIDP patient like me who functions as well as I do and until the benefits of other treatments outweigh the risk, I will continue to avoid all Western medicine’s “help”. I feel very betrayed by the lack of care I’ve received.

        That said, three months ago I started to research the GAPS diet and started the full version of that diet. AIP was far too strict and I learned from others that autoimmune diseases can be treated and reversed with management of a leaky gut, detoxification and eating an unlimited amount of healthy fats, raw dairy, fermented foods, eggs and raw egg yolks and cholesterol to help the damaged myelin repair. I want to treat the CAUSE of my illness–not cover it up with IVIG’s band aid. I am making significant progress on GAPS and the guidance of the Nutritional Therapists at Biodynamic Wellness in California. I can see little improvements week by week and it gives me hope. I can hold a pen again and scratch out my name. I can type this message to you where before I would need to dictate it. My balance is improving and some nerves seem to be slowly regenerating (and it hurts!). My hair stopped falling out, my skin is clearing and I just keep getting up and going each day.

        Here’s the book on Amazon: https://www.amazon.com/gp/product/0954852079/ref=ppx_yo_dt_b_asin_title_o07_s00?ie=UTF8&psc=1
        And the nutritional therapists who help me are here: https://www.biodynamicwellness.com

        I wish you blessings and improved health so very soon. Stay strong!

        –Rachel

      2. @Rachel Ballard, Hi Rachel: thanks for your response. I am amazed at how closely aligned our CIDP experience has been. Aside from your symptoms starting about 6 months earlier than mine everything else has been identical (except your horrific spinal tap experience). Doctors have pretty much failed me so I feel a betrayal as well and that is why I started looking into and focusing on the inflammation and autoimmune part of this puzzle. I did IVIG treatments during the 1st two months of 2020 with no change and lots of side effects (including making me feel worse). So I stopped that but then decided to do Subcutaneous Ig treatments which I have been doing for about 4 months now. It also is not helping but the side effects are almost non-existent so I am proceeding along for at least a little while longer to see if I can get any better results (although at this point I am not expecting anything positive to come out of the Subcutaneous Ig treatments). I refused the plasmaspheresis feeling like you did that its complications weren’t worth the risk especially when I read that it didn’t generally produce any more positive results that IVIG. My most challenging symptoms now are bone- crushing fatigue and weakness (sometimes have to stop slicing a banana because it is too exhausting), pain, pain, pain, ability to walk, overall balance, etc. The list goes on and on. I know you know what I am talking about.

        Thank you so much for sharing more of your experience with me and also for your info on the GAPS diet as well as Biodynamic Wellness. And thanks for the links. I will start to check those out today. I am so happy to hear that week by week you see little improvements which of course are so hopeful for you.

        One further question, could I have your full email address? Or should I just continue to use it here on this page.

        Thanks Rachel – Kathleen

      3. @Kathleen Kriebel,

        I read in a forum years ago that the reason dysbiosis continues for so long is that candida and other pathogens consume mercury and/or aluminum from the vaccines. The good bacteria usually keep the troubling strains in check but when they are holding mercury it’s as if they are hesitant to tackle them and the infection lingers.

        Natasha’s excellent book the GAPS diet and ‘The Autoimmune Fix’ from Tom O’bryan explains how autoimmune conditions start in the gut and how to heal through diet. If it is taking forever for this to happen there is a good chance chelation is needed. Search for ‘frequent low dose chelation’ protocols that were started by Andy Cutler. Also John Matsen’s book ‘Eating Alive 2’ is excellent at addressing the mercury issue from amalgams and vaccines.

        *an important note to make is that if you feel mercury might be an issue don’t attempt chelating if you still have mercury in your mouth…swap the fillings first by a qualified dentist specializing in safe removal.

      4. This is one part of a big puzzle for some people, Wil. A good note I’ll add is that you need to find a holistic dentist schooled in the SMART method or other proper removal techniques and you need to be healthy enough for removal. Your healthcare provider should be able to provide individual guidance on amalgam removal. I have my own scheduled for a few months from now. 😉 –Rachel

    7. I have CIDP … was initially misdiagnosed so took about 3 years to get on right track. changing my diet to gluten fee to see if that helps further. Hang in there

    8. Rachael this is so heartbreaking reading your journey with the after affects of that vaccine. We are praying for you daily for God’s healing and an anointing as I make a salve to send to you – Blessings and prayers for healing.

    9. Such an amazing and heartbreaking journey you’ve been on, Rachel. I had a “not so” similar one in 2017/2018, and I know how hard it can be. We’ve never met, but I know what a wonderful person you are by following you. I wish you continued progress in your health journey, and I will pray for total healing. God bless! ~Sue

    10. You are an amazing woman!! As you know, I also have autoimmune diseases. RSD/CRPS and Myasthenia Gravis (MG) along with Fibromyalgia and Neuropathy, not to mention other medical issues.

      With all that said, I know God has been good to me…There’s always someone worse off than me, like you and I feel for you!! You have the best fight in you of anyone I know!! The research and the way you have chosen to tackle this horrible disease is remarkable!! I admire your strength and will power and I pray for the very best for you!! May 2020 be a healthier, happier year for you and your family!!!???❤❤❤

      1. Do you know the quote about being sad that you have no shoes until you see the man that has no feet Kim? I am grateful, grateful, grateful and like you, very aware that there are so many out there sicker than I am! Prayer is my only strength in all of this! I hope you have a wonderful and healthier 2020 as well. –Rachel

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