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At War with Myself: My CIDP Story

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.

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.

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.

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.

Here’s to many more good days ahead.

–Rachel

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.

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Kathleen Kriebel

Wednesday 27th of January 2021

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

Kathleen Kriebel

Thursday 28th of January 2021

@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

Rachel Ballard

Wednesday 27th of January 2021

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

Mary Ellen Marlette

Thursday 3rd of September 2020

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

Rachel Ballard

Friday 4th of September 2020

Yes I've been gluten free for three years. It doesn't seem to help but then who knows? I keep doing it anyway!

Barb Maher

Thursday 30th of January 2020

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.

Rachel Ballard

Friday 31st of January 2020

Thank you Barb! Your salve is a blessing in my life. Keep those prayers coming! --Rachel

Sue Ringsdorf

Thursday 9th of January 2020

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

Rachel Ballard

Friday 10th of January 2020

Oh thank you Sue! I didn't know you'd battled anything like this! You'll have to share your story with me sometime. God bless you as well. --Rachel

Kim Honeycutt

Wednesday 8th of January 2020

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!!!???❤❤❤

Rachel Ballard

Wednesday 8th of January 2020

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