I’m healing from CIDP

    • Anonymous
      October 7, 2011 at 9:38 pm

      Just thought I’d share the good news. I’ve been off IVIG for one year, and have had a significant amount of neurologic recovery. I started out last summer working with a Nurse who uses a Volt machine to look at acupuncture points and assess nutritional deficiencies. I got weak for a bit in the fall and the beginning of the winter as I stopped using IVIG, but then I got stronger.

      Then I got pneumonia twice at the end of the winter and spring. Pulmonary function tests showed some increased paralysis in my respiratory muscles. My pulmonary Dr. was thinking IVIG again. I wasn’t. So I went to see a holistic MD. She looked at my whole health profile from before birth. She pick up that my beginning of life I did not develop good gut flora, and suggested that I look at the GAPS diet.

      I have been doing the GAPS diet, and my body is healing, and healing, and healing.

      I just thought I’d share. I wish everyone abundant healing and wellness. CIDP is a horrible disease, it was killing me, but my body was very toxic, and so I had CIDP. There is no more disease progression, only healing progression, so maybe I don’t have CIDP anymore.

    • Anonymous
      October 8, 2011 at 9:10 am

      Erin, I am thrilled to hear that you are healing. It gives people hope to learn of your experience.

    • Anonymous
      October 8, 2011 at 11:31 am

      Erin that is wonderful news. I had never heard of the GAPS diet until reading your post. I just googled and read a bit about it. Sounds like a really tough diet to get into. May I ask what your CIDP symptoms were? I’m willing to look further into the diet and discuss it with my husband as he has CIDP and I have MS. I have long believed that intestinal issues are a root cause of auto immune diseases. What does your daily diet consist of now? Thanks.
      Laurel

    • Lori222
      October 8, 2011 at 8:57 pm

      it is great to hear succes stories. i was interested in what your experience going off the ivig was? I am currently on a 16 week weekly ivig schedule in attempt to “reboot” my immune system and stop active cidp. you mentioned that you got weaker before getting better once going off the ivig–did your dr say that was normal?
      I find the holistic approach and treating the whole body not just the disease interesting . glad it is working for you

    • Anonymous
      October 9, 2011 at 10:38 pm

      Laurel,
      My CIDP symptoms were lack of feeling and partial use of arms and legs, seizures, partial respiratory , and GI paralysis, extreme weakness, inability to regulate body temp, usually cold, though some times sweating, cold patches of skin all over for no reason, burning pain that changed to complete loss of feeling.
      What I eat:
      lemon water. cod liver oil, fresh made vegie fruit juice with raw egg, avocado and homemade sour cream, eggs, bacon, sauerkraut, meats, broths veggie except starchy ones, fermented veggies and dairy, animal fats like ghee, bacon fat, lard, chicken and duck fat, coconut oil, olive oil.. look at the GAPS sites: gaps.me and gapsdiet.com and you will get some good ideas. There are also many blogs and other sites with recipes and other support.

      Lori, my dr expected me to get weaker going off ivig and I expected the same, cuz the IVIG was letting my immune system off the hook. I got weaker, but I didn’t have CIDP relapse, in fact, my CIDP symptoms continued to decline. I did a lot of rehab during that time too, PT and adaptive skiing with a coach, so my progress was supported.

      The biggest change and improvement thought started with going off of all sugars and dairy and then realizing that I was grain sensitive and beginning the GAPS intro. It’s always two steps forward and one step back, but the backward ones are getting smaller and smaller.

      My life is good, my port-a-cath is going to be removed as soon as I can schedule it. I’m going back to work with a new career, and getting off disability. It’s still a process, I’m not 100% (whatever that means), but I’m in many ways better than I’ve been in my life, and each day is better.

    • Anonymous
      October 10, 2011 at 12:47 pm

      Erin thanks for the info. I will look at the sites you suggested.
      Laurel

    • Anonymous
      October 10, 2011 at 8:53 pm

      I think I will need to buy the book Erin. Looked at some sites and I probably need the book to absorb the whole theory. Diet does sound tough in many ways, but worth it. I guess it is switching to eat to live versus living to eat.
      Laurel

    • Lori222
      October 10, 2011 at 9:53 pm

      thanks Erin for the info—interesting:)
      I wonder if the fats in the GAPS diet had to do with helping your cidp. I dont know anything about that diet, but I have read that good fats help with the healing process of nerves. With the food choices you mentioned, it seems there are lots of fat choices in this diet.

    • Anonymous
      October 17, 2011 at 9:31 pm

      Thanks for posting that Erin, and congrats on doing so well. I work in a health food store (health and wellness are now my interests after having this awful illness). We recommend the GAPS diet for ADHD children and people suffering with autoimmune diseases all the time. It is a miracle how it changes peoples lives.

      I used a similar diet to heal myself as well and have not had a relapse for 13years. Our bodies are amazing as long as they have the right tools to work with, mainly food sources.

      Take care, and I hope you continue forward on your health journey.

    • Anonymous
      October 18, 2011 at 10:22 pm

      Wow what a journey for you 🙂
      I am so happy you have so many positive responses in your healing progress! I will also be reading up on this Gaps diet.

      Thank you and best wishes

    • Anonymous
      October 19, 2011 at 8:18 pm

      I have just ordered the book from GAPSdiet.com, thanks to your story! I hope I get similar results! Fingers crossed!!:D

    • Anonymous
      October 19, 2011 at 10:22 pm

      I love learning about new things. I will be checking this out. I did start accupuncture. It has helped me alot.

    • Anonymous
      October 19, 2011 at 10:24 pm

      Linda, what was your similar diet?

    • Anonymous
      October 20, 2011 at 8:57 am

      Which book did you buy? I am also interested in the diet, and I hope anyone who tries it will let us all know the results.

    • Anonymous
      October 20, 2011 at 11:03 am

      Erin, that’s wonderful news! 🙂

      I took a quick look at some of the foods included in the Gaps diet and I’m very excited. I need to visit the grocery store and luckily, most items on the list I pulled are certainly within my budget. Hopefully, I can glean enough info from Google to make interesting meals until I can locate a copy of the book.

      Thanks again for sharing!

      Take care,

      Tina

    • Anonymous
      October 21, 2011 at 1:00 am

      So happy for you! I really want to try something new and different. I’ve been wanting to change my diet for some time. I may at least try some form of this- It seems like it would be so hard. But if it helps- definately worth it.

    • Susan Smith
      April 1, 2016 at 1:44 pm

      Hello, I am newly diagnosed with CIDP and have started steroid therapy. I’m a believer in treating the whole patient and came across a book called the Wahls protocol. It’s a Doctor who has used nutrition to greatly improve her MS systms. Amazing story actually. Her theory is that the same diet (Paleo) could benefit folks with other auto-immune diseases. I’m wondering if anyone has tried this and had any success?

    • jk
      April 1, 2016 at 11:01 pm

      I cannot recall anyone reporting long term improvement based on any form of diet.

      However, I was surprised to find that Dr David Perlmutter who, according to his website is recognized internationally as a leader in the field of nutritional influences in neurological disorders gave a favorable review of the book you mentioned. He states, in part- “…this valuable book provides fundamentally important information for each and every one of us.”

      Here: http://www.drperlmutter.com/review/wahls-protocol/

      As it turns out Dr. Perlmutter came to my attention from Dr. Stephen Sinatra a top Integrative Cardiologist.
      Dr. Sinatra provides a list of Doctors here:

      Dr. Sinatra’s Physician Referral List

      A truly Paleo Diet would seem to be difficult to follow.

      Moreover, according to a report to Congress on Progress in Autoimmune Diseases Research by the National Institutes of Health by THE AUTOIMMUNE DISEASES COORDINATING COMMITTEE contains this- “Observations such as these illustrate the difficulty of separating relevant genetic factors from environmental influences such as diet, infectious agents, occupational and residential exposures, and lifestyle factors such as stress.”

      See the entire report here:

      http://www.niaid.nih.gov/topics/autoimmune/Documents/adccfinal.pdf

      Best outcomes to you