hippimom2...diagnosis of CFS for my daughter

I feel a little overwhelmed right now but after spending about 45 minutes to an hour with the specialist, going over blood test results, taking an extensive history and doing a physical exam, the specialist says she does have CFS.  They ran more blood tests and she will go back in six weeks.  He wants her to try guaifenisin (Mucinex) as some people get relief with this. 

He gave us a lot of reading material and the following is from some of that material:  Based on research done in the United Kingdom Enteroviruses (Coxsackievirus B and Echoviruses) are clearly important causes of this disorder.  Viral genome (RNA) was found in the blood and in the muscles of CFS patients by several researchers, although the NIH/CDC in the United States could not reproduce the same results (but apparently this was 10-15 years ago!).

During and after initial infection, viruses often hide in our body by manipulating our finely orchestrated immune system and vulnerable cells.  Animal research has demonstrated the presence of stable viral genome in cells long after the initial infection but the "true viral particle" is no longer recoverable.  Once viral persistence is established and protected by our own cells, the immune response can only futilely react to these parasites causing continuing or cyclical symptoms of CFS, and yet not able to eliminate them.  Virus "hide and seek" may be the reason why different researchers could not consistently demonstrate the infectious agents.

By carefully evaluating 600 CFS patients over the last 6 years (and apparently spending at least $150,000.00 of his own money), our center demonstrated that various infectious agents could cause the common symptoms of CFS.  Enteroviruses are likely important causes of CFS in our geographic area.  Viral genome can be found more than once in the blood of some of the sickest patients.  Viral persistence causing severe fatigue was also supported by resurgence of the virus when the patients relapsed after a short course of antiviral treatment.

He has been doing more research and is hoping that in less than a year the CDC will change their tune.  Remember when the idea that H. pylori could caused ulcers first came out?  Most doctors thought it was all quackery.  It was all too simple.  But once the truth got out, it just snowballed.  He says these viruses are so smart.  Most people fight them off with no problem but some people can't.  He said, "If I had diagnosed someone with the bird flu virus and they were in my office, I would have at least 25 reporters in my lobby, but no attention is given to this debilitating disorder."  The man is an obvious genius and it's hard to take in all the information he has given us.  He was trying to explain T-cells to me and the way he explained it at the time made sense but for me to repeat it..... I can't!

Anyway, I've gone on long enough.  Thank you for listening

Hippimom2-

The doctor, Dr. Chia, is an infectious disease specialist/internal medicine doctor in Southern California.  What is really ironic is that our pediatrician (a close friend of ours) has been working with him, helping him gather information for his research and referring her ill patients to him when she would suspect CFS.  Our youngest daughter, 15 years old now, got really ill last August with what our pediatrician suspected was an enterovirus.  It was at that time she told us about Dr. Chia, CFS and the research.  She was at the point where she was going to refer our youngest to Dr. Chia and prepared us for the worst possible scenario for our daughter.  Thank God it never got to that point but it took her over a month to recover and she still has some "residual" symptoms.  She couldn't participate fully in PE for several months.  It makes me wonder now how she might do in the future.  I know it manifests itself different in every person and the symptoms can come and go.  I think his whole idea of being genetically predisposed to not being able to fight off these viruses is right on.  My sister, all three of my daughters and I all have many of the same symptoms. 

Anyway, my 20-year-old who was diagnosed yesterday, also saw the same pediatrician but about three years ago switched over to our primary care doctor who is also helping Dr. Chia!  Our family practice doctor started noticing a pattern with my daughter.  Dr. Chia did a seminar at our local hospital, Torrance Memorial Medical Center, where our doctor was the moderator, on CFS and his research.  Our doctor recommended we view the tape that was made of the seminar.  My daughter was ill at the time we viewed the tape and she was so fatigued that she couldn't even stay awake to see the whole tape!  When he started talking about extreme fatigue, I looked over and she was sound asleep at 3:00 in the afternoon! We went back to our doctor and requested a referral to see Dr. Chia and that's what got the ball rolling.  So that's the story of how we came to find him.  We are so blessed to have found such wonderful physicians. 

I'll let you know how the guaifenisin works for her.  Take care!  How is your little boy doing?  And you?