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.
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.
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.
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.
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.
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.
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!
- 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.