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Seattle, WA: Harborview Chronic Fatigue Clinic

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

  1. KENNY-SILVERS

    KENNY-SILVERS conscientious objector

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    Last edited by a moderator: Aug 29, 2014
  2. SOC

    SOC Moderator and Senior Member

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    Don't forget that you can also use the PM feature here at PR to communicate privately with other members without either having to give a personal email address. Click on the Inbox in the upper right of the screen and then Start a New Conversation at the bottom of the dropbox.

    This feature can protect your privacy on multiple levels, will allow you to block communications if the a person becomes difficult, and provides the option of reporting inappropriate communications to moderators. So in many ways it might be easier and safer than using private email. :)
    MeSci and beaker like this.
  3. formerpokerplayer

    formerpokerplayer

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    I saw Dr. Marty Ross in the Seattle area and he was very open to listening to what I had going on. He seemed more like a lyme doctor to me and didnt really understand Post Exertional Malaise. I have yet to find a doctor that understands PEM and how doing too much on a certain day can cause a PERMANENT worsening of energy levels.

    Anyway, he uses supplements that he has had success with. He is also knowledgeable about what other doctors to see. He knew he couldn't help me and referred me to a neurologist, who kept me on the klonopin I need to be able to function. So I think he is worth a shot. He is empathetic.
    WillowJ likes this.
  4. PallasKat

    PallasKat

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    Hello @formerpokerplayer ! I found this thread while searching for the Harborview Chronic Fatigue Clinic (which is now UW medicine) which my PCP wants me to contact. I saw your comments about Dr. Marty Ross - and went to his website. I liked what I saw in his intake forms. Are you still seeing him at all? I have not had any lyme testing done - so I don't even know if that could be the cause of my symptoms.

    I have all the symptoms of CFS - only they are a bit more **mild** than most of the folks I read about in this forum. Although I can no longer work full time - I am able to have 3 to 4 "good days" per week as long as I take care to rest and to have plenty of time to myself. PEM is a big issue. My body/joint/muscle pain (especially neck - bilateral) has been on-going for over 4 years - and I have had major sleep disturbances for 6 to 7 years (severe night sweats & vivid exhausting dreams).

    This is just a brief overview - but I wonder if you feel it might be worth me seeing him - based on your interaction with him and his clinic?

    Thank you so much!!

    Fellow Seattleite,

    P-Kat
  5. PallasKat

    PallasKat

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    Thank you @EMilo & @WillowJ - my PCP has asked me to contact the Harborview Chronic Fatigue Clinic for consult, so this is very helpful information !!

    Best,

    P-Kat
    EMilo and WillowJ like this.
  6. Strawberry

    Strawberry

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    @PallasKat Please check back here after your appointment and let us know how it went! If they have changed over time, it will be nice to know.

    A year or so ago I had thought about switching to UW Medicine, but the doctor they assigned me was very young, and extremely arrogant. Actually quite derogatory.

    There is a local CFS seminar coming up in October, so I am crossing my fingers that the wind will change direction after this. The one Prof Edwards went to was inspiring!
  7. CFS_for_19_years

    CFS_for_19_years Senior Member

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    @PallasKat, there are so many fine practitioners (NDs, MDs) in the Seattle area, I wouldn't waste my time or money with the Harborview/UW Medicine people (Harborview has been under management by the UW for decades, it's just a name change).

    The referral you received might have been generic, and not related to any actual help you might receive from Harborview/UW Medicine.
    I'd hate for you to go through the same thing the OP did. The clinic has been in operation since the '90s and I've never heard anyone say they were glad they went.

    If you've read through this entire thread then you probably saw the link to this thread:
    http://forums.phoenixrising.me/index.php?threads/doctor-near-seattle-wa.20028

    and maybe you saw my post here with various practitioners listed:
    http://forums.phoenixrising.me/index.php?threads/doctor-near-seattle-wa.20028/page-2#post-504253

    I would try to find someone with a lot of experience treating CFS/ME/FM and maybe who uses some of the modalities that interest you (acupuncture, IV vitamins, etc.).

    BTW, you can still have CFS/FM and function as well as you do. I worked after I came down with CFS until my body gave out and couldn't recover from every virus that came along. I'm now housebound.
    PallasKat likes this.
  8. KENNY-SILVERS

    KENNY-SILVERS conscientious objector

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    @at - Sure is a lot of Washington CFS people . The best Cfs Doctors are the ones you do not go to .
    There's one medication that boosts your immunity . I've had good luck via people on this site . But , it seems
    most of the time people only listen to what they want , or expect to hear . It's just not that simple.
    PallasKat likes this.
  9. KENNY-SILVERS

    KENNY-SILVERS conscientious objector

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    @ AT It's just a junk email . That's what it's there for
  10. KENNY-SILVERS

    KENNY-SILVERS conscientious objector

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    @ AT Yes , an old girlfriend worked at Harborview . I think they just changed the name over to UW about 5 months ago
    PallasKat likes this.
  11. formerpokerplayer

    formerpokerplayer

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    Hey PallasKat,

    As I said before, Mr. Ross knew he could not help my symptoms and referred me to another doctor who has prescribed me a drug that helps me. He is worth a shot. I think your symptoms match what he may be able to help. Don't be afraid to go to a doctor, but don't be afraid to tell a doctor "NO, I DONT LIKE WHAT YOU ARE SAYING", also.

    Best Wishes,
    FormerPokerPlayer
  12. Strawberry

    Strawberry

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    @formerpokerplayer How long have you been seeing him? I just found some reviews that aren't so glowing after a time. It sounds like initially people think he is great, and then he gets frustrated and "fires" his patients who are then left wondering how to get off the drugs he prescribed.
    PallasKat likes this.
  13. PallasKat

    PallasKat

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    Hello @formerpokerplayer, @KENNY-SILVERS, @CFS_for_19_years & @Strawberry ~

    Thank you all so much for your responses! :)

    This is interesting: I tried calling Dr. Marty Ross this morning but their outgoing message didn't allow me to actually leave a message (!) then I tried to email them and their email address came back undeliverable (!?) - so I tried to contact them via facebook (as they suggested on their website) and their facebook page doesn't seem to have been completed (!!??).

    I work at from home doing on-line marketing and graphic design - (sometimes for a local pain clinic) - I'm pretty tech savvy - so I found this to be pretty strange even though it is a Saturday. Maybe it is their way of not taking any new patients ;)

    Oh well....

    I am glad to have the additional info about Harborview/UW - I have a WONDERFUL family doc who wants me to look into the program....so, I am going to call them, speak to a referral coordinator, and see what my gut tells me. I will let you all know how it goes.

    Thank you again for all your input and support....It is incredibly helpful to be on this forum and learn from everyone.

    Warmly,

    P-Kat
    Last edited: Sep 27, 2014 at 2:04 PM

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