I’m healing from CIDP
AnonymousOctober 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.
AnonymousOctober 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.
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
AnonymousOctober 9, 2011 at 10:38 pm
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.
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.
AnonymousOctober 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.
AnonymousOctober 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!
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?
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.”
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:
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:
Best outcomes to you
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