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Seattle, WA: Harborview Chronic Fatigue Clinic

Discussion in 'ME/CFS Doctors' started by EMilo, May 19, 2013.

  1. oc100

    oc100

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    I completely agree Kenny! I am taking tons of supplements and vitamins, and don't really want to try any more prescription meds unless a new miracle cure comes along, as most meds have given me more difficulty than helped. The problem is I was finally approved for disability last March which has to be renewed every 3 years (I believe) which means I have to be followed by a primary care MD to document my illness and show I am under the care of a doc, or I may loose it. Hopefully I will be well and able to work by then, but I never expected to be sick this long so I won't hold my breath.
     
  2. oc100

    oc100

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    Also, I have never had any testing other than basic blood work, so I think it would be a good idea to get more thorough testing and possibly try immune modulators or antivirals. Does anyone know of an MD in the Seattle area that might be able to help?
     
  3. KENNY-SILVERS

    KENNY-SILVERS conscientious objector

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    Most Internal Medicine doctors seem good . All the ones I have had were really good . Contrary to popular belief ,
    Tests do not cure Cfs . Things like Grapeseed extract , Grapefruit seed extract and Colloidal Silver . And the Candida
    killer . These are the things that actually do something positive . The Colloidal blew me away . I've had sore throats since 1987 . The C/S Controls the problem.
     
  4. oc100

    oc100

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    Obviously, tests do not cure CFS. However, it may be good to know if I have high viral titers or how immune stem may be functioning to possibly try an antiviral or immune modulator. The one Internal Med doc I saw (although not in WA) was awful. Did no blood work, no exam, told me to "go home and sleep and I would get better, and the only people who don't get better are people who don't want to." Sore throats are the one symptom I don't have very often, but thanks for respondng!
     
    Valentijn likes this.
  5. Valentijn

    Valentijn Activity Level: 3

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    I see Dr. Deichert when I'm back in Seattle ... his info is at http://www.seattlehealingarts.com/pracs/prac_deichert.htm . He's in North-ish Seattle, up by 65th and Roosevelt. I live in the Netherlands, so sometimes I call him via Skype instead of having a normal appointment.

    We made some very good progress with my orthostatic intolerance problems, and he's been quite helpful for some other problems. Appointments are a good length (60 minutes for the first, then 30 afterwards, I think), and he really tries to solve problems, rather than avoid them.

    He's a full licensed Naturopathic Doctor (pretty much the same as being an MD, in Washington State), and understands a lot about supplements and such, but is also pretty knowledgeable about conventional medicine.
     
    oc100 likes this.
  6. oc100

    oc100

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    Thanks for responding! From what I have been told, NDs don't take insurance and can't fill out disability/social security paperwork, so I need to see an MD, unfortunately.
     
  7. KENNY-SILVERS

    KENNY-SILVERS conscientious objector

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    Sounds like that Doctor needs to make a appointment with Doctor Phil . I hope you do good - John
     
  8. KENNY-SILVERS

    KENNY-SILVERS conscientious objector

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    Ok I gotcha - I kept all my medical records since 1987 w/ Cfs . I think I have graduated to the Mentally Ill category
    so maybe I don't need the records after all !!!
     
  9. oc100

    oc100

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    Haha, I'm right there with you! If it isn't the brain fog, dealing with the rest of this stuff is enough to make one loose it. Wow, 1987, that's quite the long road. Hope the worst is behind you. Thanks again for writing back.
     
  10. August59

    August59 Daughters High School Graduation

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    I'll give up my Klonopin when they find a cure for this disease. I have taken 3 different times over the last 10 years and I have yet to have a hard time coming off of it as long as I tapered down to .125mg for a few weeks to a month before stopping. Gabapentin for a few weeks afterword help, L-theanine help as well did benedryl. I never had to take the .125mg for more than a month or two.
     
    beaker likes this.
  11. lazzlazz

    lazzlazz

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    This is incredibly useful information as I was thinking of going to this clinic. I won't be now. Thanks for taking the time to share your experience, and thanks to others who have added to this thread. It's incredibly disappointing that the clinic would work in such a manner, esp. with this illness.
     
    beaker, EMilo and Valentijn like this.
  12. KENNY-SILVERS

    KENNY-SILVERS conscientious objector

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    Thanks , I'm looking forward to it getting worser . As you can see , my somewhat less than eloquent grammar is quickly depreciating .
     
  13. KENNY-SILVERS

    KENNY-SILVERS conscientious objector

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    Sounds like your Psychiatrist learned his trade from watching BOB NEWHART re-runs . I'd give him a "Dr. Grabow" Corn cob pipe and a bill for wasting your time . Anyone can become a Doctor .
     
  14. KENNY-SILVERS

    KENNY-SILVERS conscientious objector

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  15. KENNY-SILVERS

    KENNY-SILVERS conscientious objector

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    Chronic Fatigue Clinic would be a misnomer . In hindsight , the surveys she was doing was actually a really
    good idea . She was probably doing Stat Algorithms via personality types . I would like to see the results . I agree with her on that idea completely . I do not think it is ethically correct the charge patients for experiments . I wouldn't be
    surprised if she had a bottle of Jack Daniels in her desk drawer .
     
  16. SDSue

    SDSue Florida

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    Careful, your age is showing;) And I guess mine is, too, now!

    I'm curious about Klonapin. My brain is a mess - constant buzzing and vibrating and pain (and no, I'm not nuts. Thanks for asking!) It's GOT to be inflammation, as it's unlike any HA I ever had prior to falliI wonder if Klonapin would help. This whole disease would be a helluva lot easier to deal with if I could just silence my brain.

    Anybody using it? How much? How often? What symptoms does it help? @August59, would you mind sharing your experience? Thanks.
     
    EMilo likes this.
  17. KENNY-SILVERS

    KENNY-SILVERS conscientious objector

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    When I first got ill . The headaches were like none other . Are you taking anything that may cause this buzz feeling ?
    Stress or diet may be causing these problems . Or not enough sleep . I would drink some coffee . Get a bottle of
    Sovereign Silver (Colloidal) , Candida Killer , and a Refrigerated Probiotic such as Raw Biotics . I would not eat dairy or meat . They contain hormones and antibiotics . 80% of illnesses and your immune system are closely related to
    what is going on in your stomach .
     
    EMilo likes this.
  18. SDSue

    SDSue Florida

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    I'm starting to wonder if Melatonin is causing it? I've ruled out nearly everything else.

    I have Sovereign 10ppm in my cupboard - I'm a bit nervous about it, as I already carry a huge metal load (mercury) and wonder if silver compounds all that? I gave up gluten over a year ago, and recently stopped dairy (great wailing and gnashing of teeth!!!) but feel worse if I don't eat meat.

    Getting ready to attempt an extreme gut makeover with probiotics and herbal antibiotics. Yikes!
     
    EMilo likes this.
  19. KENNY-SILVERS

    KENNY-SILVERS conscientious objector

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    Melatonin is a good call . 10 ppm is good . I started
    with Colloidal , and it removed my sore spot in my throat (infection) . This link makes perfect
    sense . I had my Tonsils removed in 1988 . With loads of anti-biotics . This lady here has her act together .
    I figured the blood tests would be more expensive than the Candida killer and Probiotics . Plus the blood
    test could be inaccurate . I suppose . I would try a liver cleanse on the mercury . I want to try the liver cleanse next .

    http://www.mindbodygreen.com/0-8376/10-signs-you-have-candida-overgrowth-what-to-do-about-it.html
     
    SDSue and EMilo like this.
  20. lazzlazz

    lazzlazz

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    Seattle

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