Hi Brenda, I’m so sorry you’re struggling but glad to hear you are working hard to fight back. I’m definitely not a lover of plant based diets but if you feel good on that I’ll cheer you on! Sunscreen choices I like include Crunchi: https://crunchi.com/collections/sunlightcollection?als=lowtoxlily (all of their products are non toxic) and Badger brand or Thinksport which you can get on Amazon. For shampoo there are brands like Evolvh https://www.evolvh.com/ which is pricey or something like Attitude which you can buy on Amazon much more affordably. Right now I’m using Kitsch shampoo bars and really like those! https://www.mykitsch.com/ I hope that helps! –Rachel

Hi Kathleen, thanks for reaching out. I’m so sorry you’re battling this. It seems like a lot of these diseases get the super active people. I was one too and I meet a lot of them as I spread my message. You may want to go slow on PT–overworking your body before it has time to heal up some can make symptoms worse. See how you go with that. I had two nerve conduction studies (failed with flying colors), there are no blood labs that will show CIDP specifically, but it does show on MRI and spinal tap. Both of those I consider to be essential tests for a solid diagnosis and to rule out a lot of things. I couldn’t lift my left arm either–I remember that well. To stop progression it’s a full life change. Total detox, good sleep, finding underlying stressors (I had 12!), and a complete diet change that focuses on whole foods and blood sugar control. You can read more about my diet here: https://feastandfarm.com/diet-for-cidp-guillain-barre-syndrome/ along with details on the Nutritional Therapists who treat me. There are often very long waits between appointments so you have the power here–do all that you can while you wait and you’ll be that much further along. I wish you all the best in your journey. –Rachel

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.

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

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