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 the guidance from Biodynamic and 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.

    A note on naturopaths and functional medicine

    While no two people respond the same way to care, I do want to caution those of you looking for help with naturopathic or functional medicine providers. They are not bad people but it has been my experience that their care is incredibly expensive and not that effective.

    Naturopathic care for me consisted of $1000 per month in supplements. I gave myself mistletoe injections only to have 12″ hives each time I tried. And the only diet advice she gave me was to eat “green apples” and avoid gluten. I think she was trying to be easy on me maybe? I worked with her for almost two years off and on.

    The only functional medicine care I’ve had was when I wanted additional testing I couldn’t get on my own. My metals test (which showed copper toxicity), and a mold test (negative) were done there.

    I walked out with some blood work also at a hefty $2,000 price tag out of pocket. I do still call the office to repeat the metals test occasionally, but the functional doctor said she’d need to call Harvard to figure out how to pull the copper but she never followed through on that and didn’t know what to do.

    My NTP at Biodynamic Wellness did though. A few supplements and 8 months of work and we got the copper out for $500 or less including my hour Zoom call with my NTP.

    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!

    Progress Update 6/23

    I’m still moving forward! No IVIG or steroids at all. My husband received a cancer diagnosis in October 2022 and the six months of navigating chemo and his care (which was also on my diet) did trigger a flare in December in my legs and my arms in April. However, my NTP did find a chronic virus (likely either EBV or CMV) showing in my blood work and we began a protocol to kill it and OH MY how wonderful it has been.

    I’m no longer having cycles of sick followed by two or three days of good then sick and flared up again. It feels wonderful to be free from five years of that.

    My fingers are a tad weak but that will level out. I have been able to attend (walking unassisted) my daughter’s high school graduation and all of my son’s baseball season. I even worked five hours in the concession stand! It was so fabulous.

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    32 Comments

    1. Hi Rachel, thank you so much for this blog – it is very inspirational. I’m just curious how you are doing these days, if you continue to recover and what has been helping you? I have an autoimmune issue very similar to CIDP and have been doing a detox diet and supplements the past 6 months. I’ve been feeling better since then, but still symptomatic – especially weakness in my legs and feet. Progress has been slow – but I guess that is just how recovery from autoimmune goes. Hope all is well.

      1. Hello Ellis,
        I am still doing great! No progression of disease. Lots of hard work on recovery still but I am living a full and happy life. I go to physical therapy and work hard there but I can do most anything I want to. I can’t say that I am symptom free even three years in to this disease so six months is just the beginning but if you are feeling better that is definitely a start! You may have additional issues that need to be uncovered before you can really see the reversal you hope for. Do you have a natural health minded practitioner who is exploring your root causes thoroughly? Chronic viruses, metals, gut imbalances, nutritional deficiencies, stress, sleep, etc. all need work to see full recovery. I have resources in this article for the clinic that helps me if you need it. I wish you wellness–Rachel

      2. That’s great to hear! Yes, I’m working with a functional medicine doctor. It took me a long time to even discover that all my nerve issues were autoimmune related and then to find out the high levels of toxins in me was shocking. I’m still working on getting better sleep. Thanks for sharing your story and progress. I hope we both become symptom free soon.

    2. I am newly diagnosed with CIDP st 73. My symptoms started with an intestinal /colon issue in November 2022. Also had shaky legs and weak, rubbery feeling knees. Becoming ill during the holidays, made it harder to get into doctors. Gastro doctor thought perhaps gallbladder. After a lot of tests and a lot of bloodwork, that all came out normal, my PC referred me to a neurologist who couldn’t see me until end of April. By that time, I experienced numbness knees to toes. I was told I had moderate to severe neuropathy. He thought it was my back, so I had an MRI on my lower lumbar, which came back norma. Next I had auto immune antibody tests and one came back positive for GBS. He told me I needed to start IV infusions every three weeks. I also started PT which is helping. I have a second opinion next week, and I have some of the same concerns about the blood/vaccine.
      I ran across your blog and glad to have some info since I am not sure about infusions.
      Thanks for posting!

      1. Hi Mary, I’m so sorry you’re fighting this! I’m mostly numb knees to toes as well and what a wait for a neurologist! That’s so terrible. I’d highly recommend a diet change to help jumpstart healing and finding that root cause which (sounds) like there’s something going on in your gut which is there for all of us with GBS/CIDP. I remember when doctors thought my early symptoms were coming from my back. We went down that road for a year or more before I got really sick. Remember that IVIG never treats the reason you are sick. Certainly do as you choose but if you don’t find the root of the issue you’ll continue to struggle. Regular doctors only have plasmapheresis and IVIG which are immune management tools but not addressing why the immune system is doing what its doing. –Rachel

    3. I’m reading the comments as well as your account, Rachel, and I’m thanking God my case isn’t as bad as it could be. After half a dozen years of dealing wit this, what I’ve got now is drop foot in my left foot, general weakness and atrophy in the lower legs, somewhat limited mobility with my thumbs, and some burning and tingling in my feet. I didn’t know before reading all this just how bad it could be. My sympathies and encouragements are with you all.
      My first indication that something wasn’t quite right was when I noticed the toe next to my big toe on the left foot wouldn’t straighten out. It took a permanent set in a crooked position. About two years later I began experiencing drop foot on that side. I went to a neurologist who had me go through nerve conduction tests and several other tests to diagnose, but they could come up with nothing definitive. At first the neurologist thought I might have ALS, and he was very sympathetic with this patient who he thought only had a short while left. 🙂 But later it became apparent it wasn’t ALS because of the slowness of onset and progression. So finally he advised me to get a biopsy of my leg which would give a positive diagnosis. I was at first reluctant to submit to the procedure, which involved general anesthesia and removing nerve and muscle tissure. It sounded very invasive and extreme just to get a diagnosis, but after nearly a year of my stalling around, I relented. My instincts were right. It was a nasty procedure which I’m still recovering from 9 months later, and I’m a relatively healthy person.
      Armed with that diagnosis of CIDP, he prescribed an IVIG treatment, which he said was expensive but held out hope of arresting the progression and maybe even some reversal. What he didn’t make clear to me was that the IVIG was plasma, a blood product. I thought it was infused medication. By the time I learned this, the infusion was already on its way to my residence. I was going to have the infusions at home under the supervision of a nurse who would come once a month. My concern, although some might think this is silly, was the vaccination status of the donors. With all the adverse effects and reactions of the Covid vaccine I had heard and read about, I didn’t want to take a chance. We contacted the manufacturer and they said they didn’t collect that information from their donors. So I decided not to go through with the treatment. However, I got stuck with a bill for $5,000 for the treatment anyway. I’m not too concerned, I think God’s got this. When my wife asked me if I would have gone through with it if I’d known I was going to have to pay anyway, I said not a chance. I still have an appointment with my neurologist in December but I think I’ll just cancel. No sense in throwing good money after bad. We contacted a naturopath who had helped my wife through cancer about 10 years ago, and he prescribed some meds, among them methylene blue, which is a blue dye formerly used for blue jeans (!) as well as naltrexone. I took them through the first prescription and didn’t notice any change, so when I ran out I didn’t refill. Now I’m just trying to eat right, exercise, and stay as healthy as I can for my remaining years. I’ll be 74 on Sunday, so I figure I’ve done pretty well. I’ll try cutting out all processed and junk food, which is never a bad idea. A friend said he knew people who were greatly helped by walking barefoot in grass. Something about electrical impulses and the earth ground. It’s worth a try. I’ll definitely look into the GAPS diet you’re on. Thanks to you and to all the other contributors.

      1. Hi David, thanks for coming by. I’m so sorry you’re facing this disease and I’m surprised they diagnosed you with biopsy. Though it’s obviously possible the typical method is nerve conduction study, MRI and spinal tap–all of which will be abnormal in most cases. I understand your concerns about IVIG. It is a blood product and in my case I wasn’t willing to endure the side effects for days after infusions. I hope your naturopath works out. I personally found them expensive and useless. Methylene blue and LDN (low dose naltrexone) may (big may) help some but they won’t be magic bullets for sure. I tried LDN. It was a terrible experience for me. Toxins deposit in fat. Myelin is 30% fat and what has been most effective for me was to detoxify our lifestyle and also work on detoxifying my body while also giving it deep nutrition and good fat to begin replacing the damaged myelin. It has been incredibly helpful. Just don’t waste your money or time on things that aren’t worth it. I wish you true health and wellness and that you never get as sick as many people with CIDP are. All that best to you! –Rachel

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    About the Author

    Rachel Ballard, RN, BSN brings more than 20 years of professional nursing expertise to Feast and Farm. With a love for nutrient dense foods that support wellness, she works to distill complex health information and current trends into recipes that fuel the best version of yourself. Read more about Rachel here.