hippimom2...diagnosis of CFS for my daughter

Tofiga7

Regular Member

Joined : Feb 2003

Posts : 28

Posted 5/17/2006 7:10 PM (GMT -7)

Hippimom2-

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

Veteran Member

Joined : Jul 2005

Posts : 5403

Posted 5/18/2006 8:32 AM (GMT -7)

Tofiga, it sounds like you found an amazing doctor for your daughter - that can make all the difference in the world. I am sorry she has CFS, but at least now you know what she has and you can face it head on. THat's really interesting about the enteroviruses - I never knew that. I agree with the doc that so little attention is focused on CFS when it is so debilitating. You don't even hear much about it anymore. Fibromyalgia has gotten a lot of attention, but not CFS. But with doctors like the one you saw, hopefully some advances can be made.

What type of specialist did your daughter see and how did you find him?

Tell your daughter that I hope the doc finds some treatment for her that will help her start to feel better and function better. She's welcome to post here anytime too if she has any questions or worries.

Please give us some updates when you have a chance. I'm sure you have a lot to sort through right now.

Take care

Diagnosis: Suspected Lupus 2004; Raynauds 2006; Sjogren's 2006; CFS 1991; Mono 1985

Meds: Plaquenil 400mg; Tramadol 100mg 3-4x daily; Amitriptyline 10mg; Neurontin 200mg; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain

Please allow HealingWell to continue helping others by donating: https://www.healingwell.com/donate/

Tofiga7

Regular Member

Joined : Feb 2003

Posts : 28

Posted 5/18/2006 12:09 PM (GMT -7)

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?

hippimom2

Veteran Member

Joined : Jul 2005

Posts : 5403

Posted 5/18/2006 8:18 PM (GMT -7)

I'm glad the whole chain of event lead you to that specialist. It might have helped that you are in California since that is where CFS fisrt got attention in the 80's when a lot of people in the Tahoe area developed CFS. I do think there is a genetic predisposition for these types of illnesses - your family and mine are a good example of that. Right now I'm dealing with kidney issues related to lupus - they aren't working like they should but thankfully it doesn't look like there is any damage yet. It is just something that has to be monitored. My son has an appointment with his pediatric rheumatologist tomorrow. HIs last round of labs actually looked worse, so we'll see what his doctor says.

Take care and, yes, I'd like to know how the guaif works.

Diagnosis: Suspected Lupus 2004; Raynauds 2006; Sjogren's 2006; CFS 1991; Mono 1985

Meds: Plaquenil 400mg; Tramadol 100mg 3-4x daily; Amitriptyline 10mg; Neurontin 200mg; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain

Please allow HealingWell to continue helping others by donating: https://www.healingwell.com/donate/

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