Hi. I am new. Help me. Also, any resources in San Francisco?

Discussion in 'Fibromyalgia Main Forum' started by pinballwizard, Jul 31, 2008.

  1. pinballwizard

    pinballwizard New Member

    I am new. Here is my story.

    I think I got a parasite infection in Latin America last October.

    In November and December I got the flu 5 times--I would eventually conclude I was getting sick because my immune system was weak due to dirty water I drank down there.

    In late December and January, I got severe diarea (sp) doctors believed it was a parasite or bacteria perhaps and I went on antibiotics and antiparasite medicine.

    In April, I went on Anti-parasite medicine again which I think also kills good bacteria too. That was my 4th cycle.

    Sometime in the months following, my gastroenterologist said the parasite must definitely be gone and I have post-infectious IBS.

    I think it was late April, I went to a rheumatologist because of joint pain.

    He said I had IBD. I did not believe him but I got tested for that. It came up negative.

    In June/July I went to Seattle to get tested for Allergies from Dr. Wangen a prominent IBS doctor and that helped. I took a battery of tests. I dont have celiac disease. I am allergic to yeast and sugar cane and cutting this out has helped.

    I am beginning to believe I have CFS. I have joint and muscle pain, head aches, serious fatigue. I cannot workout without being tired for a long time. I get depressed easily.

    Now I am taking ambien and hydrocodone.

    It was my last day with my idito rheumatologist.

    He said I had no inflammation and therefore I should not see him anymore. He therefore thinks my mind feels too much pain for some reason and he thinks I should take an anti-depressant and it might re-harmonize the brain chemistry. "it is all in my head".

    I am at about a 60 on the scale and I am dropping. What should I do?

    My biggest problem is muscle pain. I am used to joint pain back when I was diagnosed with rheumatoid arthritis ten years ago. (I am wondering about that diagnosis now too)

    I just want to go to some place that will handle all this. I am thinking ribose will help get rid of the muscle pain. I think I need to spend less time in front of a computer with the light blaring in my face.

    I want some quick fixes... something to help me catch my breath. I am thinking vitamin injections or something... I am so tired of looking around.

    It seems as though my problem originated in my stomach. I know this to be true to some extent because I am very allergic to certain things now. I need to get rid of the candida.

    And perhaps the problem originated in my brain, too. My brain is fatigued and overactive.

    I live in San Francisco. I wonder if there are good resources here I can quickly go to.

  2. 00a7370

    00a7370 New Member

    If that's true, this is an incredible emergency. That rheumatologist is supposed to try and help people going thru this.

    I live in So. Calif. so don't have any referrals for you, but please don't stop trying. We've all been thru the bad MD's until we finally find a good one.

    Look on the good doctor link and see if there is anyone in your area that will treat you with dignity and respect that you deserve.

    I'll be thinking of you.

    All the best.
  3. pinballwizard

    pinballwizard New Member

    60 on the scale for Fatigue.


    I would really love to get some direction. I was hoping for more replies.
  4. 00a7370

    00a7370 New Member

    I'm bumping this up. That means it will be on the top again.

    Sorry I misunderstood you. I don't have CFS. I have fibro.

    I thought more people would reply to you.

    Let's hope someone does.

    Take care
  5. jasminetee

    jasminetee Member

    I live here and I spent over $10,000 trying to get well. That was well before I tried Valcyte which didn't work for me either. I say be wary of any doctor or alt. health care practitioner or Chinese Medicine Specialist that says they can help you. I do think they believe they can, they're not lying and they do want to help us, but they were unable to help me.

    I wish I could tell you something different but that is the truth of what I went through.

  6. sascha

    sascha Member

    you might get some useful inf. from san francisco cfids/fm support group meeting (held 2nd saturday of each month, 2-4 pm, at Davies Medical Ctr at Castro and Duboce. there's free parking in the garage. meetings are down in basement of bldg ahead and on the right as you exit parking garage.

    there isn't a quick fix for cfids. probably what you want is a definite diagnosis first of all. then figure out options and determine course of treatment you want to try.

    there's a lot of inf. online at this site- there are protocols by notable cfids doctors you can access (like Dr Cheney, Dr. Montoya, Dr. Lerner) over the Internet. sorry- brain's a little foggy-

    good luck in your search- best, Sascha

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