I'm just offering my experience and I believe it is what I should do. I was only given very hopeful experiences.
I have had several friends go down there and we were all offered the same 3 things except one of my friends was given an antiviral for mono and like I said, her titers got worse and she was basically told there is nothing they can do for her just like with me. We all had the same labs done, I ended up paying thousands of dollars for them out of pocket (well my mom) and all FOUR of us, with vastly different results were offered in this order: #1. equil, #2. immunovir, #3. LDN. Also I was not given samples for immunovir like other people so there was $300.00 down the drain.
Do I think I have CFS? Unfortunately yes. I wish I didn't. But I am "severe" on the spectrum and get insane reactions to everything. Can't depend on GP's, mine was horrible and most are.
My first appt. went so horribly, I can't even describe in words the disappointment, that I did have some sort of a nervous breakdown and my mother and I left miami that night as I was passed out in the back seat after crying for hours. It was rushed, too quick, the secretary was unbelievably rude to me on the phone and in person (she's no longer there), and I felt completely hopeless. My questions weren't answered.
Also, with my friend she said she didn't need a tilt table test she could just doing something there in the office (WHAT). I completely disagree with this! Does Dr. R do tilt table tests? I don't even know, not with me or my friend.
The other thing, I would bring up issues and she would just say "go see a sleep neurologist" as if I hadn't done that like 10 x's before. Or mention dysautonomic problems and "go see a dysautonomia specialist" as if they are just around the corner. I thought that CFS specialists were supposed to cover all of those problems, I don't have the money nor transportation nor health to go off seeing more specialists, I really wanted them to try and treat everything as a whole.
This is my experience. We ALL have different experiences. Some people love a doctor while others, not so much. That is normal. It would not be fair of me not to mention these things that I have heard from other people too. Please don't bash me, I'm really sick, and I've been completely honest with how it went down for me. If you don't like it, I can't change the past.
Also it is there job to say "maybe you don't have cfs", "maybe you should look into other things". Maybe you should look into this: ___________.
I would totally disagree that she prescribes based on your "individual tests and symptoms". I would put my hand on a bible and take an oath to disagree to that. When my 4 friends and I compared our labs, compared our symptoms (through email), SO DIFFERENT yet we were all offered the same things and given a piece of paper with the same supplements. I just disagree based off of personal experience. Also while in the waiting room I overheard other patients talking about how immunovir made them "crazy", "depressed", "incredibly moody"...................
I can say that I've heard differently about klimas, heard good things but who knows. In the end, I don't think any of them have a CLUE what causes cfs or what to do. Immunomodulators can make people crazy sick and way worse, it's quite a russian roulette gamble.
With the 3 things I've mentioned I still think it's important to let other users know what else she does offer instead of just saying I'm wrong. Naturally it would be good to discuss what else she's done for YOU or your loved one.
It seems harsh but I wish someone had been more honest with me before I blew all my money and hope going to miami. This is a truthful experience from a patient who has seen hundreds of doctors.
P.S. My mom is an R.N., a very caring and compassionate nurse who is really good at her job, and even considering going into psychiatric nursing. She would back up everything I've said here and probably have more to add, she had the same feelings and we often don't agree on things.
No need to respond to me, I've got enough to deal with. Just discuss your personal experiences and the varying treatment your were offered.