Hi everyone, I’ve been reading these boards for a while, but it’s my first time posting. After 16 years suffering from these awful symptoms, a specialist in NYC just recently diagnosed me with ME/CFS. I wanted to share my experience with the board, and hopefully get some answers or advice from others afflicted with this disease. My memory, sleep and cognition problems keep getting worse every day. I was recently laid off from my job, and to make matters even worse, my girlfriend started developing similar symptoms earlier this year. Last week she was diagnosed with ME/CFS as well, with blood test results that mirror mine. Not only am I devastated, but feel incredibly guilty and horrified that my girlfriend got this dreadful thing too. Words fail me to describe the anguish that I feel when I see her go through the same painful and puzzling symptoms I started experiencing so long ago. It breaks my heart to the point of desperation. Like many of you, my symptoms started suddenly, after what felt like a mild flu or a cold for a week later, but left me with issues that never went away: memory lapses, concentration issues, severe brain fog, seriously unrefreshing sleep, headaches, enlarged lymph nodes, fatigue, visual disturbances, chronic sore throat, on-and-off fever, etc. (For the record, a year prior to this “flu-like” illness, I had a major pneumonia that almost kills me soon after finishing my postgraduate). The lymph nodes kept getting so enlarged that some of my doctors conducted two biopsies thinking it was lymphoma. Thankfully, it was negative for cancer, and was told I had undergone some sort of “Epstein-Barr mono-like infection”. Since then, I visited every doctor in every specialty under the sun, with no definitive results. You name the specialty, and I’ve tried it. On occasion, doctors would find minor things here and there (allergies, very mild apnea, etc), and I would enthusiastically pursue therapies for such diagnoses, but they provided no improvement whatsoever. I can’t begin to calculate how much money and effort I spent trying to figure out the cause of my illness. Too many dead ends to count. I’m sure I could buy a house or a luxury car with all the money I spent in doctors and medication for 15 long years. At the beginning I thought I had Lyme disease, for lack of a better diagnosis, but countless tests (Elisa and WB) proved it negative, time and time again. I even visited a renowned Lyme doctor that put me on large doses of doxycycline for over 2 years, with no improvement of my condition. Around 2001 or 2002 I even got inoculated with the Lyme vaccine, which didn’t make a difference (my memory is awful; I don’t remember where or when I got the vaccine, but I know I got it around that time). If they test me for Lyme now, I would show positive because of the vaccine, so that may send doctors in the wrong direction. Recently, my ME/CFS-literate doctor reviewed my history and did a full panel blood test which showed the following results, among many other things: Chronic EBV titers very high: EBV VCA IgG 4.1, EBV NA IgG 8.0 HHV-6 antibodies high: 0.80 Very low HNK1 lymphs CD8-CD57: 1.8%, abs 40 /uL Major vitamin/mineral deficiencies: Magnesium, D, C, B-12 My doctor determined these numbers are indicative of ME/CFS, and got me started on a high dose of Famvir for now, to see how I tolerate it. The medication seems to make me feel “out of it”, and I have developed a major respiratory infection soon after starting on Famvir. Not sure if they are related. I just feel absolutely devastated and demoralized about my ordeal. Not only I have wasted 15 years chasing false clues, not finding any relief to my condition, but also it turns out to be something with no known cure. This disease has limited my career prospects and dreams (the worsening memory and brain fog are things people notice), and depleted my meager savings. I haven’t had a good night sleep in 15 years despite trying every sleep medication out there. I’m exhausted, disheartened, completely broke, and now jobless. And to make matters worse, my girlfriend fell ill too with this evil thing. I love her so much, and I’m beyond heartbroken to see her go through this too. I feel completely demoralized, hopeless, helpless, and cursed. Ok, I’ll stop before I completely break down in depression. I have some questions that I would like to posts to the board, in hopes that someone more knowledgeable can point me in the right direction: Lab results: for what I’ve read, my lab results seem pretty consistent with other sufferers of ME/CFS in these boards, particularly the high EBV markers. My girlfriend got very similar numbers, which seems to make sense. Why would she get this thing now, after we’ve been together for a few years? Is this common? Why now, and not 2 years ago? Lyme: The fact that for a solid 4 years all my lab tests were negative for Lyme, even those requested by the Lyme specialist that put me on doxy, seems to point that Lyme wasn’t my problem. The fact that my girlfriend got sick recently also makes Lyme less of a possible culprit (her tests show she's negative for Lyme). Now, I got the Lyme vaccine a decade ago. Any Lyme specialist in the NYC area that I could consult? Is there a test that can differentiate if you are positive for Lyme from infection versus vaccine? I just wanted to make absolutely sure it is not Lyme (plus a percentage of people who got the vaccine got fairly sick too). C-Pneumonia: Over the last few years I had pneumonia at least once every single year. And when it’s not pneumonia, I would definitely get a major bronchitis every winter, like clockwork. I know it may have something to do with the very low HNK1 lymphocytes. That said, after one of the recent bouts of pneumonia, my general practitioner performed a test that revealed it was C-Pneumonia. Apparently, this variation of pneumonia causes symptoms similar to ME/CFS and Lyme, and if not treated with long-term doses of antibiotics, it would keep recurring time and time again, in the form of pneumonia and bronchitis: http://cpnhelp.org. I would like to follow this trail as well, and was wondering if there are doctors in NYC specialized in this type of pneumonia. Brain fog, memory and cognition: will they get any better? Will my brain start improving at a point? Anything else out there I could do to make it better? It has put a major dent in my career. Can’t emphasize it enough. Thanks in advance. Sorry for the long letter. Best.