Greetings to Everyone....I would be appreciative of your thoughts....prior to September 5, 2015 I strugggled with unreitting infections, orthostatic intolerance, neuro isues etc.....BUT i was able to maneuver around my house with asional lying flat rest periods and actually leave my house for 90 minutes at a time....dinner with husband...yoga class...do an errand and lie flat in my car.try another errand....you get the idea. Since September 15, 2015 I have had 4 infections , one requiring hospitalization for 5 days. I have been SEVERELY struggling. Neuro problems worse and include extreme sensitivity to sound and to light, severe head pressure , severe lymph node pain back of head, cant process information well, cant concentrate etc. Central Nervous System problems...cant be upright for any real length of time, tahycardic ( heart rate 112 to 122 with trying to cook a simple meal, sit in the shower, walk around my home and this is accompanied by shortness of breath, poor temperature regulation and waking up in the middle of the night tachycardic. There is more ...but I know you all get it. For my part, I have my 3rd IVIG infusion on Monday (1st one no side effects, 2nd fusion worsening of the severe headache that lasted 3 days and hip and leg bone pain that lasted 5 days. For Monday, they are going to slow down the rate and add more fluids. It takes all I have to get there as well as doctors appoinments. My PCP sent me to a hematologist in October for my low IgG and elevated serum electropharesis and though he does not know CFS he thought it wise to start IVIG as my labs were showing chronic inflammation. I made an appointmnt with a neurologist for Tuesday to see if he would ordr a PET scan to see what is going on...my husband printed out the recent study of CFS abd PEt Scan so I could show him I want to make an appointment with a cardiologist but am very concerned she will order a stress test which will worsen things...I am hoping she would order a 24 hour Holter Monitor ....that would be vey telling....does anyone have any suggestions on how to approch this? I also was thinking of asking my PCP for an oxygen trial. I am sure my o2 sats would be in the high 90s but I feel so oxygen deprived!!!!!!! Has anyone had suucess with oxygen therapy? and what can I do to get some energy into my cells quickly...take D Ribose or something? I also made an appointment with a Naturopathic MD but the appointment isnt until the end of December. It will take everything I have to make these appointments and try not to appar like I am exxagerrating by immddiately lying on their table. I have had CFS/ME for 15 years and this is the worst since I was diagnosed. I am sad I will miss Thanksgiving with my family, and miss dinner with my husband to celebrate our 25th wedding Anniversary on Tuesday. I always thought that I mostly handled this horrific illness with grace and optimism over the past many years but when you cant walk, talk or even sit up for very long it challenges you to your very core. Were would people with CFS/ME find out abut how to part of any new research at the NIH...I am willing to move in with them....they can study me extensively...I have alot of material for them to work with ...as I am sure all of you do too.... Does anyone have any other words of wisdom or advice? Blessings and thanks to everyone!