Hi,
My daughter's situation is confusing, like many or all others with this disease. She has been sick for 18 years. She has severe photophobia, hyperacusis, PEM, serious fatigue. She lives in a darkened room with air filters and sound generators. She is unable to read, listen to music, have sustained conversations, be on a computer. She lives a life of almost complete isolation. She has a devoted boyfriend, who has stuck with her for the entire time. He is a marvel.
I first heard Dr. Chia talk in London in 2007, at the InvestinME conference. From him and prior, I knew the history of enteroviral connection with ME in the UK. I listened to Dr. Chia carefully - and still do. He really wants to help solve part of this illness.
In his 2007 Dr. Chia spoke of the ARUP coxsackie antibody via neutralization test. Coincidentally I had been running the ARUP coxsackie antibody test on my daughter for several years. I continued doing this for at least ten years, several times a year. My daughter's antibodies for CVB4 were consistently at the highest level, over the ten year period. There was almost no fluctuation. (Other coxsackie antibody test did not pick up a strong response and were modest).
I have tried to get other patients and doctors to do this antibody test via neutralization at ARUP, but no one - I emphasize no one - shows the slightest interest.
This has been the one consistent antibody blood test with my daughter, and, in her case, I believe it means something. Very few doctors know what to say about these results or give them any credibility - none.
My own ARUP antibody result for CVB4 is 1:160. This is strangely high.
For me, there is another thread. My son, two years younger than my daughter, has type 1 diabetes. Type 1 diabetes has some association with coxsackie B4.
My own supposition is that my daughter and my son were both exposed to a coxsackie b4 virus prior to when my third child was born.
My daughter very well might have multiple things wrong with her, but I believe she has a coxsackie b4 infection.
For more than ten years, it has amazed me that very few people pay any attention to Dr. Chia
Chris
cfspatientadvocate.com