Reply To: New Member Intro

November 8, 2019 at 2:53 pm

Hey! I’m Ron.
I am so sorry you’re going through such a tough time. I’m not sure if I can give you much insight, but maybe I can shed some light on CIDP as I understand it, and in turn give you some pertinent information. I was diagnosed with CIDP about two years ago. Before that I battled with Lyme disease for years. I suspect anything that sets off your immune system will create the right conditions for CIDP to take hold. That, the antibiotics for the Lyme, the oxycodone for the neuropathy pain. All these conditions and medications alter your immune system and metabolism.
I am not a doctor but I’ve given more thought and done more research into my condition than my doctors have.
With doctors, most I’ve found, will proscribe the longest taking therapy, if they even agree to try and treat you at all. I don’t want to seem cynical, but most really don’t want to try very hard. Unfortunately doctors are in business to make money. They don’t go through med school because they want to help people.
There! I had to get it off my chest! Ok, let’s move on.

My experience with IVIG, Gamunex, the neuropathy, the numbness, the pain never subsided. In that aspect, it didn’t work for me. But the weakness, that one symptom, the IVIG did keep the weakness away. That symptom went away shortly after the first infusion.
I’ve begun my second treatment of Gamunex, after taking a break for 8 months. The weakness has gotten so bad I can barely stand. This second sets of treatments don’t seem to be as effective and fast acting as the first treatments.

A relation between chemo and CIDP I’ve not heard. I actually heard of a therapy for CIDP using chemo.

I hope you find the answers to your questions, I feel your frustration, believe me.

My best advice, do your research. You are your best advocate. If you need someone to talk to, you know where to find me.:-) Ron