Mabes, thanks... I watched this the weeks before I received a definite CIDP diagnoses in 2012. I understood nothing about CIDP then; didn't know the terms and was in a quandary concerning neurologists at Kaiser medical who seemed confused regarding treatment.
On second viewing, I understood about 80% of the lecture. Initiating IvIG and receiving the correct loading dose was a monumental challenge through Kaiser HMO for me. Many mistakes were made and I am know switching to Blue Sheild (HMSA HMO Hawaii).
I responded within three days to my first IvIG treatment, but the loading dose was insufficient to carry me for a month. Eventually, I went to 240 grams at 120 grams every two weeks, along with AZ at 10mg per day. This works.
From this video, one can see that plamapherises almost always works if a person has real CIDP; steroids work well, but side-effects are detrimental in the long run, and IvIG appears to work 40-50% of the time.
What is missing are the causes of CIDP/GBS. I'm am hopeful that the cause can be discovered, thereby leading to a treatment and perhaps a cure.
Is it possible that ALL CIDP/GBS afflicted persons have a common denominator that initiates these diseases? Flu, flu shot, surgery... all physical affronts to the body and immune system. However, I'm inclined to think that the real mitigating, initiating common factor is emotional trauma combined with physical trauma as the immune system fights to regain control and balance.
Some combination of body DNA coding misdirections are transcribing our IgG genes to constantly call the T-cell cavalry. Every person on Earth has the fight or flight chemistry and the raw emotions that accompany these powerful hormones. No one seems to take the past emotional trauma into account...
Neurologist rarely look for the emotional trauma as a creator of aberrant body chemistry. What are the factors that we all have in common that cause these autoimmune reactions? It could be a hormone created in a time of grief, or love, or fear that combines incorrectly in the humeral soup of our body chemistry.
I think once a cause presents itself and if it can't be "cured" it becomes cadp, the I in CIDP changes to A meaning acquired. That list is growing. All of the neurologists I have asked and trust don't know the cause or causes. Plain and simple. But that won't stop me from trying to figure out how I can get well. I can't or won't accept the chronic. I keep finding things to fix and as I am fixing them I am noticing longer stretches of strength and endurance with less medicine. I think if I continue to change the "conditions" this disease thrives in, through diet, exercise, micronutrients, antioxidants and yes strong positive emotional health that there's a possibility to be in that 30% who recover. And maybe 5 years from now that number will be 50%. My husband has stopped using weed killers in the grass and despite living next to a forest we have a beautiful lawn because he has strategically created conditions for the grass to thrive. It doesn't matter the name of the weed because it's gone. To that end I think more needs to be studied on the conditions we can foster to overcome this disease regardless of the cause.
In chemistry class we mixed two chemicals, but nothing happened. Add a bit of agitation, a stirring of the pot and then a small dab of nitroglycerine is created and then... BOOM!
What I am wondering... (hypothetical example here) is a million people are exposed to RoundUp and they use a sunscreen, but nothing happens to them internally. However, six people out of that million are exposed to RoundUp and they use a sunscreen, but they argue with a spouse that day, a relative is killed that day in a traffic accident, or they get a flue shot or break a bone or have surgery that week... and these disparate actions and events set up a cascade of unusual body chemistry that results in CIDP/GBS. And, perhaps, results in many of the rare diseases listed in the right column of this web page.
If we are not genetically predisposed to CIDP, then some aberrant, acquired cellular chemistry is interfering with DNA transcription, but perhaps the catalyst for CIDP/GBS may be our unique, emotion-driven fight or flight hormones or mind states that produce the unique chemistry that is our undoing.
mabes said:
I think once a cause presents itself and if it can't be "cured" it becomes cadp, the I in CIDP changes to A meaning acquired. That list is growing. All of the neurologists I have asked and trust don't know the cause or causes. Plain and simple. But that won't stop me from trying to figure out how I can get well. I can't or won't accept the chronic. I keep finding things to fix and as I am fixing them I am noticing longer stretches of strength and endurance with less medicine. I think if I continue to change the "conditions" this disease thrives in, through diet, exercise, micronutrients, antioxidants and yes strong positive emotional health that there's a possibility to be in that 30% who recover. And maybe 5 years from now that number will be 50%. My husband has stopped using weed killers in the grass and despite living next to a forest we have a beautiful lawn because he has strategically created conditions for the grass to thrive. It doesn't matter the name of the weed because it's gone. To that end I think more needs to be studied on the conditions we can foster to overcome this disease regardless of the cause.