Need Referral Northern California

Discussion in 'Fibromyalgia Main Forum' started by joeb7th, Oct 3, 2006.

  1. joeb7th

    joeb7th New Member

    Is there anyone on this board who knows any doctors from San Francisco on down to Monterey, California who will not dismiss me as a nut case?

    I have been ill since December, 2005 and in some ways I feel worse now. My medical symptoms are many and yet the PC I have just dismisses them all because I have had many tests that don't show him what he feels should explain my symptoms. Most of these tests were done six months ago and longer and he refuses to have new similar ones done.

    But the biggest frustration is that he doesn't know what could be causing my symptoms and down plays them as more "psychological" than physical.

    I am 55, and do not have a history of seeing doctors more than once or twice a year and only if I absolutely have to.
    But last DEC. I got a flu bug, fainted and smashed my nose and went by ambulance to our ER.

    I was sent home after 2+ hours against my wishes as I felt I was going to die. I had never felt so bad and weak in my life. I had beginning bronchitis, I had a fever, I had low potassium electrolytes, I had a slightly higher than normal white blood cell count, I was coughing up fluid and blood and swallowing blood. And the blow to my head smashed my nose to the right, broke my septum, and my lips were swollen, my front tooth was loose. I was having a hard time breathing through all of this and the constant stream of blood and swallowing this just was traumatizing. But, sorry, hospital too full.

    Near the end of my ER visit I was given these two antibiotic pills called "Levaquin."
    I was then wheeled out to my wife's car at midnight and I fainted 5 minutes later in her car on the way home. ER docs said this was a "vagal" response. I was brought back, put in a recovery room till the next day when I was again sent home after asking to be kept. And before I was sent home they gave me more of this Levaquin and another 4 or 5 days dose which I took.

    That night at home my body exploded in pain and symptoms that were nightmarish. Insomnia, crazy dreams, my insides felt like they were going haywire, my shoulders and arms and hands BURNED with pain and even went numb a few times. My bladder went crazy. I was panicky. The next morning I called an ambulance and had them take me back to ER saying I felt like I was dying and was going to pass out. Thus started a series of ER visits that first week and second until they were calling the psych ward people. Each time they would do their tests, say they could not find anything, give me atavan and send me home. Each time also they asked me what I was taking and I told them this Levaquin, and they "never" told me to stop taking this or mentioned that maybe I was having an adverse reaction to it.

    Since that time I have developed extreme tendonitis, torn rotator cuff in right shoulder, fractured vertabrae L-1 posterior, developed serious damage to my middle intestine ( I lost 35 lbs that first two months as I could not eat the pain was so bad ) I have had brady cardia down in the thirties first time in my life. Fainted in the hospital one time and had a 3 and a 1/2 second pause one night there. I get jumps in my heart and it makes me just stop and feel like I am going to faint. My throat always feels bone dry, and on and on etc. I am unsteady, weak, and fainty all the time...but this PC I have dismisses all of this as psychological. I live in a relatively small area and once an established well known doctor here deems you a difficult patient it's awfully hard to find a new one. But I am desperate at this point.

    [This Message was Edited on 10/03/2006]
    [This Message was Edited on 10/03/2006]
  2. lisagra

    lisagra New Member

    hi:

    sorry to hear your story..but it sounds exactly what i went and continue to go thru.

    in sept 04, i crashed with debilitating fatigue, dizziness, pain and weakness. i was in and out of er's and hospital stays for the next 12 monhts. every test came back normal...they kept writing me off as depressed.. i finally got a fm/cfid's dx...

    anyway i see dr. green she has offices in palo alto and sf. not sure she is accepting any new patients though.

    i have been dx'd with lyme disease, babesia, erlichia, bartonella, mycoplasma, cpneumonia, mpneumonia and have very hi viral titres for hhv6, coxsakie virus, cmv, parvo virus and strep pneumonia...basically i'm just a walking infection.

    sounds like you too have some type of intracellular infection....these infections are difficult to test for since they are cell wall deficient.

    your reaction to levaquin sounds like a herx...the antibiotic kills off the bacteria which releases toxins into your body that make you feel even sicker.

    basically the bacteria is doing everything in it's power to keep it's home in your body...by sending off these toxins upon it's death...it's "hoping" you'll stop the treatment and thus allow the bacteria to continue to thrive.

    where do you live...if you can't get in with green there are some other good docs who handle these types of illnesses in the santa cruz/watsonville area. can't remember their names
    off the top of my head but if you are interested, i'll find them for you.

    oh yeah, i think i know of a good one in monterey too.

    listen....just remember you're not crazy, you're really sick. it's just that if mainstream docs don't understand it, they don't awknowledge it and they push it back onto you.

    it's a very hard lesson to learn about the medical system when you are at your weakest and most fragile.

    if you have a pcp who will help you out until you find a good doc...ask for a prescription of doxycycline...if you herx really badly from the prescribed dosage...you most likely are fighting an intracellular infection and are going to need to take antibiotics, anti-virals and things to support your body while fighting off these things.

    if possible don't see any mainstream docs anymore. it just makes everything worse...they brush off your illness as craziness and it makes you sicker and more depressed.

    stay away from stanford, ucsf, cpmc, alta bates and the other big hospitals...they are useless with these type of illnesses.

    best of luck

    lisa
  3. cavegirl

    cavegirl New Member

    I love my doctor and he is in San Francisco, near BArt, which is what I take to get there. He does all of my pain meds plus anything else I might need. He also helped get me on disability the first time around. Let me know if you want his info.
    Whitney (infinite242@gmail.com)