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Seattle, WA: Harborview Chronic Fatigue Clinic

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

  1. EMilo

    EMilo Elizabethmilo.com

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    Hi everyone,

    I mentioned that I had had a bad experience at this clinic and someone suggested that I write about it to help others. If you don't mind, I am going to copy and paste my blog post to conserve energy. I wrote it in August, 2012 before I became housebound, before I couldn't drive anymore... when I was desperate, but didn't realise how much worse it would get. I also went into this clinic under the assumption that it was a CFS clinic, but it's a chronic fatigue clinic. Big difference. Back then, I assumed there were learned experts. I assumed someone would know how to help me.

    Also, I was careful in my blog not to name the facility or the staff, but I am here because I know now how we have to help each other. Warning: it's long!

    AUGUST 20, 2012
    My visit to the chronic fatigue clinic.

    I wish I could put into words how terrifying the healthcare system here in the United States can be and how inept so many people are in the field and how oblivious, stubborn and condescending so many of the doctors can be. Don’t get me wrong, I have the utmost respect for this field. I am fascinated by much of it. I wanted to be a doctor, then a physician’s assistant (PA), then a registered dietitian (RD), then a registered nurse (RN). I took all the prerequisites, I volunteered at hospitals, I applied to many schools and got in… But then my life took a different road.

    I knew, from working in the hospital, how despicable the drug companies are and how backwards the system is, as a whole. They make us sick throughout our lives ~ from the way grocery stores are set up to the advertisements on tv ~ and they keep us sick to profit from the drugs and the huge hospital machines that feed patients through on conveyor belts. I have seen almost twenty different doctors this year ~ usually only once. I saw a rheumatologist for a half hour who charged over $500. When I worked in the hospital, my job was to call drug companies to try to secure discounts for people who were leaving the cardiac ICU. These were generally elderly people with heart conditions and huge medical bills that needed these drugs to survive ~ to stay alive. They weren’t working, obviously, and usually their spouses were retired or deceased. I was meant to provide evidence to the drug companies that these patients warranted discounts. Disgusting. Heart-wrenching. In retrospect, I am happy my career in the healthcare field didn’t work out. Who wants to be around sick people all the time? I’d have to do my job wearing a mask.

    Anyway, I need to write a book about all the mistakes that are made when you are a patient – lab mistakes, appointment mistakes, paperwork mistakes – and about all the days that are wasted showering, driving, parking, walking around hospitals, waiting in rooms full of sick people, filling out forms that NO ONE looks at, explaining the same symptoms over and over again, getting ten vials of blood drawn so the same tests can be run again because no matter how many times you sign release forms and call clinics to ask them to fax results to your PCP, it doesn’t happen … WASTED days because no one can appreciate the time and energy and money that disappears with every doctor appointment. WASTED days because you never actually get an answer or even a theory or a call back, you are just told to make another appointment for a follow up. WASTED precious, precious days. When you think you might die, every day becomes precious.

    So, let me tell you about my appointment at the chronic fatigue clinic – a specialty clinic at a very large hospital in a very large city. A city ranked 4th in the country for rehabilitation, 6th in the country for endocrinology, 8th in cancer care, 16th in neurology and neurosurgery. Let me tell you what a joke my wasted day was.

    Over two months ago, they sent me a very thick booklet, chock full of questions which took me almost two weeks to complete – with many breaks because it was so detailed and tedious. My appointment finally arrives with the clinic that specialises in the condition that I supposedly have. I’m thinking, “Finally I get to talk to experts and get some up-to-the-minute info on cutting edge research and a plan of action for my recovery going forward!” Nope. After waiting half an hour after my appointment time (which isn’t too long by most clinics’ standard wait times), I was given a work up by an RN: blood pressure, allergies, weight etc. She also tested my tear production.

    Then a PA asked me all about my symptoms. I was told that this PA, who was very nice, sees every patient first, but, I swear to god, she came across as if she had never encountered anyone with ME/ CFS.
    “I don’t know why you don’t wake up refreshed when you do get enough sleep”, she says. Seriously? She refers me to a sleep clinic (they have no appointments for months) and tells me to take epsom salt baths and eat turkey. Great.

    “You are tired during the day?”, she asks. Tired? On a bad day? No, I’m not tired. I’m incapacitated. I’m sick, I’m shaky, I’m cement. I’m unable to move or eat or talk. She says, “You can’t eat because you are sick? What foods can’t you eat?” No, I can’t eat because the act of picking up a fork, chewing and swallowing is too much for my body to handle! Because, on those days, I’m trying not to die, so eating isn’t really my priority.

    After spending 45 minutes going through my year, my symptoms, my hell, she says quizzically, “Oh, you have muscle pain?” Jesus! Yes! Haven’t you been listening? I am in pain from head to toe, every day, some days better than others. She tells me to try acupuncture, massage, cupping and eating turmeric. Wow, this is the expert in chronic fatigue syndrome?

    For my low blood pressure, she tells me repeatedly to eat pizza, chips and pickles. She says, “Bad for us, good for you!” Pizza, chips and pickles? Can’t I just add salt to healthy foods? How about salt on my veggies or salt on my eggs? I have a Rx for pizza??

    I tell her I started LDN and she says skeptically, “I used to use naltrexone years ago for drug addicts, but I stopped.”

    Then I had a “psychiatric exam”. This was ridiculous. It was a lengthy computer questionnaire that was read to me by someone in a cramped, hot office. Most of the questions I had already answered in the tome that was sent to me to fill out months ago and all of the questions I could have easily completed at home ~ they were yes and no answers. Have you had a period of two weeks or more when you have felt sad, guilty or worthless? This sort of bullshit. It took over an hour and I kept asking her, why couldn’t this have been sent to me to do in advance? And, who on this earth is ever going to look at the answers?! No one.

    They took blood to test for vitamin B12 and zinc and something else (useless) and then they made me an appointment with the actual DOCTOR that is in charge at the CFS clinic! So, this was just a fact-gathering appointment and I’m really going to be told nothing? No one is going to ask me what I have been tested for in the past, discuss what happens when you have ME, what they know about this condition, what fits with my symptoms, what doesn’t, what the prognosis is, what treatments and drugs they have found success with… anything??Nobody is going to say, “I’m so sorry you are going through this and don’t lose hope, we’ve had a lot of success treating people with this condition.” Anything?? Nope. And, the best part? The first appointment with the clinic doctor is in January. FIVE months from now. 14 months since my hell began.

    All in all, from the time I took a shower until the time I got home, it was six wasted hours. No hope, no relief, no tests done, no information, no display of expertise, no advice… unless you count massage and turkey. I’m exhausted, frustrated, disgusted… and, unfortunately, pretty hopeless.
    beaker, RedWolfsCry, Iquitos and 9 others like this.
  2. WillowJ

    WillowJ Senior Member

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    I'm sorry you had such a difficult experience. I hope you are able to find a better doctor.

    Harborview's CFS clinic does not specialize in ME or CFS. It specializes in "vulnerable populations", such as drug addicts, chronic pain patients, and people with psychiatric-classified disease (note that I do not see the logic in lumping these together; I am simply reporting what the clinic is doing). They include ICF, CFS and fibro in these.

    I had links but I took them out in case you didn't want attention from the university
    Little Bluestem likes this.
  3. EMilo

    EMilo Elizabethmilo.com

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    Hi WillowJ,

    I got the email with your reply and your links. I will definitely take a look. I do know this NOW ~ that the clinic doesn't specialise in ME ~ but I just feel so sorry for that patient from 9 months ago who thought, "Oh, I have a diagnosis and there is a clinic dedicated to what I have, I'll be okay." It absolutely blindsided me to be told to get "cupping" and eat pickles. My health had blown up like an atomic bomb and my career was gone and not one doctor wanted to help? I thought they were all going to like Dr. House, you know? They'd treat me until they fixed me. It was a rude awakening and I had waited so many months and thought this appointment would be my saving...

    Anyway, I wanted to forewarn people. Also, if anyone has any advice on doctors in the Seattle area, I would love it ~ I don't think there are any ME/CFS experts between southern California and Vancouver.

    Thanks for the reply!
    MeSci and WillowJ like this.
  4. Valentijn

    Valentijn Activity Level: 3

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    I've been quite happy with Dr Deichert so far. He's a licensed naturopath in Washington (almost identical qualifications to an MD, regarding prescriptions and such) plus an ARNP. He's not an ME/CFS specialist, but very bright and determined. We've collaborated quite a bit on what tests to order and treatments to try, and figured out a few helpful things along the way. He's big into using supplements when indicated by the testing, but also was happy to try a Strattera prescription based on my labs. Prices are very reasonable too.
  5. WillowJ

    WillowJ Senior Member

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    I'm sorry about that. I wish I'd have known so I could have told you. None of the big clinics in the Northwest are worth going to as far as I can tell, unless all you want is sleep and pain medicines (and advice to take some exercise, which you would disregard as much as you needed to) and then you'd be ok at OHSU's fibro clinic (I know someone who has been there). I wasn't sure about the Frida Center (might be similar or might be better than that, not sure) but I think it is now closed. I didn't like anything I could read about in Seattle area.

    [edited out some bits that were confusing]
    Last edited: Aug 28, 2014
    Valentijn likes this.
  6. SanDiego#1

    SanDiego#1 SanDiego#1

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    Willow- That also goes for the clinics in the SE. I wish more of the people that have been to the "GOD" specialists would be honest so more people would not think they are going to save them. Not just for the clinics -but many of these older specialist think they are on their last leg and are overcharging and doing nothing..

    San Diego #1
  7. SanDiego#1

    SanDiego#1 SanDiego#1

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    You can also contact me by PM if you need more info.

    SD
  8. Eucalypta

    Eucalypta Guest

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    lala-land
    OHSU Fibro clinic doesn't exist anymore since dr.Bennett went into retirement. It continued for a while but the spirit that carried it was gone and many things changed among them funding to keep going.
    Frida clinic also closed its doors.
  9. WillowJ

    WillowJ Senior Member

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    I didn't know about the OHSU clinic, thanks for info.

    The Frida docs went to other locations and are seeing patients elsewhere.
  10. KENNY-SILVERS

    KENNY-SILVERS conscientious objector

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    No clinic will do any good . I went to the Cfs Clinic in Seattle . The Doctor was nuttier than a Stuckeys Log . Complete idiot . I might as well just become a Doctor . They form a Theory , and if your situation does not coincide with that theory . The means to your ends will be eliminated . As far as I'm concerned Buchwald ripped me off . And belongs in jail.
    EMilo and Kati like this.
  11. jsfm

    jsfm

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    Hi WilliowJ- I am in Seattle as well and am interested in finding out about the docs that you know in western Washington.

    Could you also tell me where to find the "Northwest Group" that you mention above? Sorry, I am still new on Phoenix Rising so I might not have explored everything yet.

    Thanks!
    EMilo likes this.
  12. WillowJ

    WillowJ Senior Member

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    Edit: I have lost my notes about Seattle docs (never saw any of them) and cannot help anyone find a doc in that particular city.
    Last edited: Aug 28, 2014
  13. KENNY-SILVERS

    KENNY-SILVERS conscientious objector

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    Doctors do not help . If you don't know what's wrong , you can't fix it . Trying to get from point a to b . You will always end up back at a . The immune system is really complicated and involves so many elements . That work off other components of your body .
  14. formerpokerplayer

    formerpokerplayer

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    I am in the Seattle area and have been having trouble with doctors. The only doctor that I am seeing now is a psychiatrist. He has given me klonopin which has been a wonder drug for me for the last 8 months and helps with every one of my symptoms. The symptoms it helps are wired but tired, brain fog, depresion, anxiety, weakness, energy, sleep etc. However, he says as a psychiatrist he doesn't "treat cfs" and using klonopin long term is not allowed for psychiatric reasons.

    I read posts of people using klonopin long term and getting it prescribed from doctors. Do you have any idea of a doctor I could go to? The psychiatrist I am seeing now is basically saying "you don't have a job in the last year I am seeing you so you need lithium or antipsychotics" and I am like lol what....

    I actually just went to a cfs specialist and on his website it said he worked with dr teitlebaum who prescribes klonopin regularly. Even this doctor I just saw wasn't comfortable with klonopin! Its the only drug that helps me. My brain feels like its on fire otherwise and I can't think straight. My brain is straight out of the cheney article, I am that type of wired but tired cfs I guess.
    beaker, August59 and EMilo like this.
  15. KENNY-SILVERS

    KENNY-SILVERS conscientious objector

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    You may just want to try a Internal Medicine doctor . If your Doctor is telling you that , I'd ask for a refund .
  16. KENNY-SILVERS

    KENNY-SILVERS conscientious objector

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    That's a controlled substance . And yes those do work really well. An Internal Medicine Doctor would be able to help you .
  17. Valentijn

    Valentijn Activity Level: 3

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    No idea about Klonopin, but for ME/CFS treatment, it might help to find an ND (Naturopathic Doctor). There's quite a few in the Seattle area, since they get trained at Bastyr University, and are properly licensed by the State of Washington. There are some limitations in what they can prescribe, but I think it's basically just opiates they can't do.

    But more importantly, a naturopath should be a lot more interested in treating underlying causes of pain and other symptoms, so that drugs with tolerance and withdrawal problems, and/or side effects aren't necessary. As an example, 3 grams of fish oil per day keeps away my constant headache (inflammation?), high doses of hydroxoB12 take the edge off my pain (antioxidant?), magnesium prevents muscle twitches and cramps, and NAC takes care of my wired-but-tired and sleep problems (elevated glutamate?). Some of those I learned about here on the forum, but others I've tried at my ND's suggestion.

    They're also generally pretty interested in testing to see where the problems might be coming from. Hence I know my glutamate and glycine are chronically high, and cysteine is low or low-normal, indicating that NAC supplementation might help with my glutamate problem by using it up to form glutathione. Something similar might be causing several of your symptoms, especially since Klonopin enhances GABA, which opposes glutamate. But opposing glutamate might not be the best approach, especially since there are often adverse side effects. Hence it might be useful to look into ways to lower glutamate instead, and get things back into balance somewhat at a more basic level, instead of responding to raised glutamate by intensifying the substance which opposes it.

    In addition, a lot of anxiety symptoms are identical to orthostatic intolerance symptoms, which can also cause weakness. NDs can and will prescribe drugs, and I take Strattera (an NRI) to help with that, due to chronically low norepinephrine levels.

    So 1) I think a Naturopathic Doctor is a great choice for long-term ME/CFS treatment, and 2) I think it would be a mistake for you to assume that Klonopin is what you need from a doctor, without first properly exploring the causes of your symptoms and the alternative treatments.
    EMilo likes this.
  18. formerpokerplayer

    formerpokerplayer

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    Thanks for the reply valentijn,

    Unfortunately, I have done many naturopaths. They helped a lot. One did neural therapy (mentioned by mike dessin and lisa petrison) and it cleared my brain fog a ton! Then I did autistic protocol homeopathy by paul herscu (the book "stramonium" I took helleborus 30c for 14 days then 200c arnica one dose, each produced great brain fog healing effects that have been permanent. I can now look people in the eyes when I talk and I can now remember many thing about my past that I just couldn't before. Unfortunately, none of these things have helped my physical energy. I have also tried all supplements possible and all the glutathione raising protocols, which all helped at first, but then crashed back down.

    At this point klonopin helps all my symptoms, just can't seem to get a doctor who deals with the brain symptoms I have where it feels like my brain is an electrical antenna
  19. oc100

    oc100

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    Hello,
    I am new to Phoenix Rising and really need some advice/help. I have had severe ME / CFS for 4+ years now, am housebound (mostly bed bound but able to be up in recliner for a few hours a day). Unfortunately, I was forced to move to the N. Seattle area approx. 15 months ago and really need a doctor familiar with ME who might be able to help me, or at least work with me and document my situation. When I first arrived in the area, I saw my mother's family physician once, who dismissed me with one sentence stating "I don't know anything about that. What do you need refilled?" her tone indicating she was done with the topic and wanted to hear no more. I brought her my records and labs from my previous physician (which she tossed aside and never looked at) and tried to inform her of my history and about the disease and she cut me off. I am too ill to even go to an appointment, much less go interviewing new doctors, so I haven't seen anyone since that last visit almost 15 months ago. Can anyone help by recommending a primary care physician who might be able to help me? Thanks so much.
    Last edited: Dec 8, 2013
  20. KENNY-SILVERS

    KENNY-SILVERS conscientious objector

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    Sorry to hear you are stuck in bed . Sounds like a serious case of CFS . There's two things about Cfs that I like .
    1. Don't have to do jury duty
    2. Don't need a Doctor
    Doctors don't know what they are doing because they don't know what the are even looking for . It's like going on a treasure hunt , except you have no idea what the treasure is . There for , you will not find it .
    There's some good supplements that I truly think help , depending . I don't offer advice anymore, as it dawned on me that no ones listens to what you say . Someday , you will be able to go to Walmart and buy a Chronic Fatigue Cure Kit . Located in the Vitamin isle , hopefully .
    oc100 likes this.

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