Yes, but what can be done for Chronic EBV and CMV? Sorry, have to chime in. Valtrex, Valcyte?? Yeah, both killed my liver. And, they don't make the viruses go away if you have a weak immune system. They can calm them down only to reignite if you stop them. And specialists don't make it better for many. Read so much on here. How many don't like Klimas? Have gotten worse with many, including Cheney?
People talk about specialists on here like they are the be all and end all. Bottom line, if they don't know what this illness is, how will they treat it? With more supplements? The methylation protocol that Enlander and Yasko are into? It can help. I know so many with CFS that have gone to specialists that are less than happy.
Redline, it's a start to look into this stuff. It's amazing to me that you can work that much. If you can work like that, you have major HOPE. That's great, but I can see why people may be questioning your diagnosis. I would get on it now. But, I am not sure I would throw money at a specialist. Enlander gave my friend the Meyer's Push and glutathione. That was his big treatment and it didn't do much. She got worse. I live on the East Coast. I am not far from Dr. Levine or Enlander, Dr. Shoemaker, and about an 8 hour drive to Cheney. All of my CFS friends around here go to these people only to become discouraged and broke. I am just warning you.
JOBS
I was in college when this thing hit me. Epstein Barr. Downhill since. I managed to go to college and work over a 10 year period. Advertising and PR. Have a 2 year degree and just one year left. I quit. I found my vocation. I have worked as a journalist, I tutored both Math and English to other college students and was paid well. I worked in radio for 4 years, I was a waitress, I worked at Pottery Barn...all of these jobs part time. Never full time.
Now I am a jewelry designer. 9 years. I own my own business allowing myself to create my own hours and get up when I want and work when I want. I have been successful. HOWEVER, now I am sicker than a dog. This has been the worst year. The pits. Work is on hiatus. I will figure it out for the fall and try and make it work.
I was just diagnosed with
Celiac Disease. 24 years I have been sick. I am wondering if this has been it all along. I doubt it. I couldn't be so lucky. I have been trying to avoid gluten for years, but didn't know all that it is in and I cheated so much. Cake, pies, a cookie. Every week. I was supposed to be gluten sensitive. Not the same thing. I have been unable to digest food for years, have lack of minerals in my body. I have been constipated or the runs for years. This is a whole new learning curve. Huge. Here's hoping my new religious fanatical diet will work. EXPENSIVE.
Holy shit.
And, was just diagnosed across the board with low iGa, low iGg, and low ig everything. So, an immunologist wants me to do a treatment that could help me tremendously, but is beyond expensive. Like thousands of dollars expensive. She wants to know why my CFS specialist never ran an iGa test or anything with the iG's. Can't give her an answer.
My big question anymore is....what is CFS? What is it? Is it just a catchall for all of us? Do we really have something else like EDS or Celiac or whatever???? Why are these doctor's so freaking stupid. Why did my doctor not tell me that I had Celiac even though I had the test done 9 years ago and the Immunologist just found bloodwork that he did that shows that yes, I showed antibodies to gluten, therefore, I have Celiac. And the stool test tested positive. And guess what? This guy (the CFS doc) is a specialist. He specializes in CFS. He is part of Poesnecker's camp. The adrenal doctor. My cousin has Celiac, too.
Why? Because once you say you have CFS and you go to a specialist who treats CFS, they stop looking for other illnesses. It's all just CFS. So, is it so great to have a specialist? When I had endometriosis, "it's CFS." Tracheal Bronchitis...it's CFS. I lost my voice due to that mess up and had to go on antibiotics and steroids while my "CFS doctor" wanted me on Cats Claw and Oregano and IV therapy of minerals for $150 a pop. Aces. Interstitial Cystitis, it's just CFS. GI problems and malabsorption, you have CFS.
Redline, you have a version of CFS with a side of such and such, while someone else is in a wheelchair, or someone else can barely talk or walk. It really makes total sense, doesn't it? Nope. I am not saying you don't have CFS, I am saying you probably do...but why are we all so sick in such different ways? If I worked 50 hours a week, which would never happen, I wouldn't be able to function and I would probably die. No kidding. I would be too sick to handle that. But the diagnosis and the EBV and the CMV...many have this. Many who are walking around and are fine. And then others are sick from it. Who the hell knows. I know people who have lyme who are dying, or have ended their life and then you have others who are out and about with no problem and they have chronic lyme. They have symptoms here and there, but are okay. Bizarre. I guess it's all a matter of the immune system and which way it wants to go. Genetics.
Find a doctor who is knowledgable in CFS, but look into specialists in other areas, like the immune system. They can really delve into it without you having to spend $2,000 up front just to see them. Let's talk about Dr. Lerner who makes you come to him to hear your test results when you live 11 hours away from him. No phone call?? He won't do phone calls. Okay, your Highness. And, he, from what I hear, doesn't like input from the patient. My test results are in? Sure, no problem. Let me get my helicopter ready. It's out back.
He might be able to help you Redline with your viruses. That's HIS thing. Viruses. You can borrow my helicopter. It's on the helipad outside of my apartment complex. Hee hee. It's really not funny. It's sad.
Sorry, but I am mad. Pissed at this illness and the idiots that deal with it. Or, don't deal with it. Somebody said something to me the other day that I love, "Don't forget, doctor's are just practicing physicians....they practice. That's it." ....right-o.