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Can Anyone reccomend a Doctor/Clinic in Western Washington State?

Discussion in 'ME/CFS Doctors' started by talkingfox, Dec 19, 2009.

  1. talkingfox

    talkingfox Senior Member

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    Olympia, wa
    Since my PCP has ever so kindly passed on my treatment, I'm in need of a good doc.

    So far I've been referred to the Fibro Clinic at UW, but I've not been able to find much on their treatments of CFS.

    Any input (to the good or bad) from anyone's experience would be most welcome. :D
     
  2. Frickly

    Frickly Senior Member

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    I noticed you are not getting many responses. It can be very difficult to find a knowledgable doctor. I live in a large city and it took me 6 years to find one and I think she may be the only good doc for CFS in the entire city.

    If you are unable to find a doc I suggest looking for a DAN! (defeat autism now doctor). They are not all equal so I think you can go online to Jenny McCarthy's website and they will have a list of docs for your area. This treatment is very simular to treatment of CFS as we have many of the same issues. My son's DAN! doctor has many parents of patients who have issues like fibro, CFS and other autoimmune diseases who receive treatment at the clinic. They will help with elimination diet, supplements, IV therapy including glutathione and B12 and test for heavy metals and will chelate if needed. If I had not found my doc I would have gone this route.

    Good luck,
     
  3. talkingfox

    talkingfox Senior Member

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    Funny you should mention that Frickley , as I was diagnosed as an Aspie around 5 years ago.

    I've been following a strictly GFCF diet (made a big difference) and the nutritional protocols as well. Hasn't made me well, but it does make things at least better. Getting rid of the casein made an enormous difference in emotional lability and some cognitive stuff. I used to get panic attacks several times a day. Now there are none.

    I ran an experiment a few months ago to find out if the supplements were indeed working or if it was strictly a placebo effect. When I stopped my nutritional support I went downhill very very fast. So I guess da placebos had nothing to do with it. ;)
     
  4. Frickly

    Frickly Senior Member

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    It looks like you are already on the right track. With a good doctor you might be able to improve on your improvement with glutathione and/or B12 injections along with checking the heavy metals.

    Forgot to mention that a DAN! doc shouldn't have any problems testing for possible bacteria and virus that could be worsening your condition. Bad news is your insurance will not pay.
     
  5. Lisa

    Lisa Senior Member

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    Hi talkingfox.

    Search Dr. Buscher here on the forums. He's my doc up in... Redmond I think. Its about a solid 2.5 hour drive for those of us here in Oly, though depending on where you live you might be able to cut 20 min off the time it takes me. I'm out past Black Lake off Delphi so it takes some time to get to the freeway.

    He's a very good doctor and very respected.

    Can't say more right now, very beat after cooking dinner but someone told me about this post since I am in Olympia too.

    Take care, Lisa

    oh, you can also take a look at my blog here at the forums or at the link in my signature. Look for the article "Back from the Wizard" and you'll get a bit of a feel for my last trip to Dr. Buscher.
     
  6. talkingfox

    talkingfox Senior Member

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    Thank you so very much for the referral and sparing a bit of your precious energy in doing so!

    I'll be looking into this fo'sure!

    BTW your blog is lovely....not that the cfs mcs thing is lovely or anything, but rather the poetic way that you put things forth.
     
  7. dannybex

    dannybex Senior Member

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    I 2nd that on Buscher...

    Dr. Buscher came to speak to our local support group as he was one of the doctors who helped a local member recover -- and she was sick for 16 years -- extremely ill. He didn't do all the work of course, she had to be very disciplined and she did other things as well, but even he was surprised that she actually recovered (and has since gone back to school).

    And although he's out of my price range ($5?), the last I heard his fees are very reasonable, considering his expertise, plus I'm sure insurance covers many of the tests and/or his fees. Just not my insurance. :(

    Anyway, very highly recommended. Am working on getting Cort to interview him at some point... :)

    Dan
     
  8. Kathi

    Kathi Senior Member

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    I have often heard that Dr. Jonathan Wright is an excellent doctor and has an office in Tacomah, Washington. In my years of research and reading, I have always gotten wonderful health ideas from his work. I haven't seen him, but I was wondering if he would work in your case. Have you heard of him ??

    Kathi
     
  9. talkingfox

    talkingfox Senior Member

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    @ Kathi

    I've not heard of Dr. Wright but I'll be researching for sure :)

    Thank you!
     
  10. zoe.a.m.

    zoe.a.m. Senior Member

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    Hi talkingfox,

    I'm in the same boat looking for an MD in Western WA to see asap. I was about to start a thread and happily found this one!

    I'd been pursuing an appt. with a well-known inf. dis. doc who put me through the paces of an unusually difficult referral process just to tell me that he "doesn't see CFS patients." He recommended "someone" at the University of WA. Very helpful...

    I have just been through the process of having my "recon" (2nd attempt) at disability denied, and after having spoken to 2 lawyers, have been told my case is "unwinnable" (not sure if that's a word) very much in part because of the lack of MD assessments and treatments. I have had two people/places recommended by my ARNP: Laura A. Marti and the Fibromyalgia and Fatigue Center of Seattle, but am not convinced of either. Dr. Marti appears to work completely alone with no office assistant and is out of network (and schooled in the Caribbean--not sure if this helps or hurts?) and the second place lists Teitlebaum's XMRV contributions to the Dr. Oz show (!?!?). I think they might be affiliated somehow.

    I've never heard of Wright or Buscher, so thanks for the heads up everyone! I remain hopeful (and exhausted by all of this) that somewhere on the periphery is a doctor who will test things like viral loads, mycoplasmas, hormones, and NK cells--here's to hoping!
     
  11. talkingfox

    talkingfox Senior Member

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    Olympia, wa
    Zoe: the Someone at the UW is still doing stuff with CBT and GET. The clinic is open 8 hours a week, and only offers counseling, massage, PT and acupuncture. My GP tried to refer me there.

    I was going to go see Buscher, but unfortunately couldn't afford the large chunk of change required up front. Currently I'm seeing a Rheum guy in Olympia. No CFS experience, but FM experience and he's at least open minded.

    I gave the FFC a pass. I don't trust Teitlebaum at all. Could be I'm just getting old and cynical however....;)

    There's also Susan J. Shlifer in Poulsbo. They're using Marshall's protocol, however, so it really depends on how you feel about that particular approach.
     
  12. zoe.a.m.

    zoe.a.m. Senior Member

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    Olympic Peninsula, Washington
    Talkingfox,
    Is the UW involved with the Harborview clinic? I think that's the place you described as I spoke to them years ago and couldn't believe what was offered.

    I just checked out Buscher's website and see he accepts no insurance or medicare and, frankly, I'm getting a little tired of this model. I can certainly understand the frustrations involved with working within the medical framework, but somewhere in there I would think part of being a physician would be treating patients who need help, period. I also never understand why out-of-network providers must charge as much as those in network, as the costs for running an office that deals with insurance is much, much higher.

    I saw Schlifer several years ago and she was interested in starting me on the Marshall protocol that day. I told her I wanted to think it over and the response was not great. I felt pushed to make an enormous decision and no other treatment was offered. I still don't really understand that.

    Off to call my insurance company, but I'm pretty sure I have to spend $5000 before they kick in for out-of-network providers, and then only perhaps 50%. So the question remains: how does one see an MD in WA for CFS/ME without spending thousands of dollars that they don't have?!
     
    EMilo likes this.
  13. talkingfox

    talkingfox Senior Member

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    Yup..the Harborview clinic is the UW run clinic. AND guess what the UW is doing in research? You guessed it, CBT and GET...STILL.


    Good luck in your search Zoe. If you find anyone, could you share?
     
    EMilo likes this.
  14. dannybex

    dannybex Senior Member

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    Hi Zoe,

    I thought that Buscher took some Medicare...at least for tests...but perhaps not. We've seen mixed results from people in our local support group...one very positive, one negative and one who's been seeing him for years off and on with mixed results. His model makes sense to me (that multiple environmental/other issues trigger CFS, with one finally being the thing that breaks the camel's back) but I'm not sure how much he's aware of other protocols. He came and spoke to our group about a year ago.

    Ditto everything that's been said about Harborview. Whenever it's brought up in the Seattle support group meetings, EYES START ROLLING. It's basically a research facility...and I guess I couldn't say more without perhaps getting in some trouble.

    Schlifer was brought up before the State Medical Board this past year, by fourteen patients. Not sure how that ended, but it was pretty clear from the initial court documents that she was prescribing the MP for all of the patients, without testing them beforehand to see if it was appropriate or not. And the record-keeping was quite shoddy. None of the patients in the local group who saw her stayed with her for more than five or six months, all due to worsening on the protocol. A shame, because she was highly regarded before she started the MP.

    A couple people in our group like Dr. Marti -- she was with the F&F Centers, but quit, started her own practice, as she didn't feel comfortable with some of their practices...at least that's my recollection. One man -- a good friend of mine -- was sick for 32 years -- and didn't begin to improve until he saw her...about 3, maybe 4 years ago now.

    Just my two cents. :)

    d.
     
    EMilo likes this.
  15. zoe.a.m.

    zoe.a.m. Senior Member

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    Thanks,

    You're lucky to have a support group where you are and have people sharing info and stories. I'm curious about Buscher's mixed reviews. Can you speak at all to the negative experience that you know of? His site and his model is impressively coherent. Dr. Marti's site is good as well, but I am hesitant to see someone who is willing to treat with hyrdrocortisone and such. I'm conflicted about wanting someone to work with who is not your average MD, but I know some of these therapies are somewhat dangerous and I don't want to go backwards. I wonder how the rates/costs for each of these doctors compares...?

    I had heard about a complaint toward Schlifer, but had no idea it was fourteen patients! I do recall that, when I met her, she seemed really really enthusiastic about the MP (sort of as though scientific objectivity had nothing to do with things at all) and I just couldn't wrap my mind around how lightly she took it. I wish she could have found a way to work with CFS/ME/FM patients without the MP so she could have furthered what she was doing before. My current acupuncturist shared space with her until a few years ago. He wanted to work with CFS patients and thought they would refer to one another, but he said she never did refer and that her patients (over time) looked sicker and sicker and he was worried that actual harm was being done.

    It's so frustrating to know that I've worked with the best people I can find (why would I go to the Harborview clinic for something I can get in town when the travel alone would bottom me out?) and, after 8 years, it looks as though I haven't pursued medical care or treatment!

    In general, have you heard more positives about Dr. Marti or Dr. Buscher?

    I really appreciate your help dan :)

    I sure will (with whatever happens)!

    ETA: Wow, just took a look at Dr. Marti's scheduling and cost links and she states that disability letters will cost "$400/hr., minimum 2 hrs." I'm a tad speechless...
     
  16. dannybex

    dannybex Senior Member

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    Hi Zoe,

    My eyes are giving out pretty quickly, so I'll have to cut it short here soon, but I can PM you in the next couple of days...if I forget, please don't hesitate to PM me. :)

    I actually haven't specifically checked out Buscher's pricing in the last year, but what you say about Marti rings true...it was my understanding that she's pricier than Buscher (but don't quote me on that!) but perhaps her malpractice insurance rates are higher...I don't know. But I don't believe she has as much experience as Dr. B....after all, she just came to the F & F Centers about four years ago, while he's been doing this for 20+ years?

    Frankly, I find it appalling that anyone -- I don't care if it's President Obama -- would charge $800 minimum to write up a disability letter. A woman in our group actually gave me some tips on getting disability, and I got it on the first try without any lawyers involved. I almost didn't get it, but at the last minute, I did. Keep in mind that while of course there may be some great and completely honest, hard-working attorneys out there, it's also in their best interest to keep a disability case running as long as possible, as they will collect 25% of any back-payments due when it is finally approved.

    Over and out -- in more ways than I'd like! -- for now.

    d.

    p.s. Lisa, who posts here, and has the GREAT blog "SunDog Tales", is a patient of Dr. Buscher, and speaks highly of him.
     
  17. Nezbine

    Nezbine

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    I've been a patient at the Fibromyalgia & Fatigue Center of Seattle (actually in Bellevue) since about August. I saw Dr. MacPherson there, he's a naturopath, I hear he started when Laurie Marti left & started her own practice.

    Dr. MacPherson helped me a lot. He tested for loads of things I've wished someone would test for (coinfections, hormone levels, etc.), and identified a lot of problems. Some things I'd already found & was treating through other docs, and he was supportive & encouraging, saying that I was farther along in their protocol, essentially, because I'd figured some stuff out with my docs before I came. He prescribed a lot of supplements and several prescription meds, and it seems to be helping. I am less fatigued, I sleep better, I am more able to actually do things I want or need to do.

    Dr. MacPherson has been supportive of me going with less-expensive supplements when I could find them, a cheaper compounding pharmacy, etc. He really helped make it possible for me to afford to see him.

    I should mention that along with all the things he prescribed/suggested, I have been doing PT for a back problem, ongoing but triggered by a car accident. This was prescribed by my primary care doc. My PT, Dzuka Lin, is very sensitive to the needs of fibromyalgia or fatigue patients, and he finds exercises that target a specific muscle without working me very hard. I have crashed a couple of times, but each time he adjusts the plan so I won't overdo it again doing that exercise. While doing PT, I have noticed that my back hurts much less, and that I have more energy, especially the day of & day after PT. I'm surprised. And it wasn't that way at first-at first I was really tired for a day or two after. His careful & slow ramping up has gotten me much better able to tolerate exercise. And "exercise" as defined by what I can handle, not by what someone else could do. It's very small, wouldn't seem like much to normal people. He has also helped me figure out how to improve activities that were painful, like driving. I went from not being able to drive much more than 1/2 hour to driving 3+ hours before the pain started, and it still didn't get as bad, even after 5 hours.

    In December or so, the FFC got a new office manager, who was pretty pushy about wanting me to buy one of their wellness packages. She suggested I take out a loan for $6000 (from a company she provided a brochure on) at zero% interest (as long as you make payments on time, if you don't it goes up to 25 or 30%), and give it to the FFC, and in return they would take care of me for 1 year. This would include appointments & supplements but not IVs. I told her I'd think about it, but what I was really thinking was that if they didn't have this good doc, I wouldn't want to go to that clinic anymore.

    Dr. MacPherson left the FFC in January, and now they have another new doctor. I debated with myself about whether to continue with the clinic, and then last week I got a letter telling me that ALL patients at all the FFC clinics will have to buy one of their wellness packages (or whatever they're called). They only sent me info on one program, it was $2300 and gets you 4 appointments with the doc, 48 supplements (4 a month), and I don't remember if it covers IVs. I doubt it. The IVs caused problems for me so I have not been doing them, so I'm not paying much attention to the coverage there. This program was for patients who are doing better & don't need the intensive level of care that they give at first.

    They will no longer take patients on an "a la carte" basis. So I said Bye-bye, FFC.

    I decided to go to my primary doc, who is very good, and who looked pretty dubious when I told him about the expensive year-long contracts. He agreed that since something is working, we'll continue the protocol they established while I try weaning myself off various things (antibiotics first, since they are causing hearing loss concerns). Then we will know which of the many things I started there is actually working. This is pretty much what Dr. MacPherson told me we'd do, once I got better.

    While I was waffling about where to go next, I got recommendations for Dr. Marty Ross at the Healing Arts Partnership, and Dr. Susan Marra, a Lyme specialist. They both sounded like they had potential & I'd be curious to hear any reviews of them. Neither takes insurance, which is the standard in this area of treatment, and unfortunately we're stuck with that for now. This is something I think will have to change if the XMRV results get solidified. That will take time, though.

    I believe that the Teitelbaum protocol is what's been helping me - but if you read him carefully you see that he is about finding & treating coinfections, hormone imbalances, etc., the same as the lyme docs & many others. Somehow his name has gotten associated with something bad, but I haven't figured out what. I think it's mainly that he is such a self-promoter.

    While I'm not crazy about the new direction the FFC has gone in, I do think they helped me a lot, and I have a big stack of test results that I can use to work with my primary care doc, beyond just continuing the protocol I've been on. For instance, they found high lead, and we haven't even begun to work on that. And there are several other things, too. So I can see lots of ways I can "drive the bus" with him, by asking for follow-up tests or treatments based on the results I have in hand. I have easily a year's worth of work that I think he & I can do together, before I need an expert. At which time I hope the XMRV results will have led to ideas for treatments.

    I am also hoping that maybe Dr. MacPherson will start his own practice, like Dr. Laurie Marti did, and perhaps the doc before her, too? (Maybe this is a pattern, which might tell us something about the FFC? I don't know.) I have not heard anything from him about a practice, but I have my fingers crossed.

    Laura
     
  18. zoe.a.m.

    zoe.a.m. Senior Member

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    Olympic Peninsula, Washington
    Has anyone in WA state been able to see a doctor--infectious disease probably?--who would test for infections? I don't expect coverage like I've read about in the Montoya study, but it would be nice to cover a number of those pathogens! Or, is it a matter of going to Reno or Florida or ???
     
  19. jms123

    jms123

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    Dr. Marti did not just leave. They fired her, and after they fired her, she sued them because, according to her, she refused to refer patients to their "preferred" ITC pharmacy, which they owned. Who knows what is true of that because they settled the case.
     

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