Doctor near Seattle, WA?

[CFS_for_19_years]

@CFS_for_19_years The Tahoma Clinic in Tukwila is where I go. So we can add Dr John Sherman to the list. http://www.tahomaclinic.com/john-sherman-nd/

I'm south Seattle, but work in South Lake Union, so could possibly do a north Seattle doctor, but I don't like dealing with the traffic that direction! If it gets to that point though, definitely worth the try!

Strawberry, it looks like you found a very knowledgeable ND! I'm glad you found a good guy.

Traffic in the Seattle area can be a b****, so traffic patterns and parking determine a lot for me too. For instance, I try to avoid the U district and downtown for those reasons and don't mind a trip to the Eastside (Bellevue) by freeway if there's a good reason to go there.

There are a ton of naturopaths in Seattle, due to having Bastyr University in our backyard. I hope the list I compiled could be a good start for someone, and sometimes it comes down to that undescribable "vibe" you get online or in person.

 

[lazzlazz]

Hi Strawberry,

Maybe your nurse relative can help you narrow down what specialty you want to see first. Though many specialists will not see you without a referral (and possibly appropriate bloodwork or at least chart notes showing a need to be there), so you might still have to solve your PCP problem.

Until we have settled on some agreed diagnostic markers for ME, you have to first rule out other likely problems, anyway, and at the moment any other diagnosis on the planet has more credibility (outside of patient circles and those few rare docs) and most are more treatable just at present.

If you want to rule in or out an ME diagnosis, the closest specialists I think are Andy Kogelnik, Lucinda Bateman, José Montoya, and John Chia. They all have wait lists. Of course if you can travel, there is nothing to prevent going farther, such as to Nancy Klimas' associate (forgot her name) or to Derek Enlander.

Dr. Kaufman is part of the Open Medicine Institute in Mountain View, CA (Kogelnik is also there). There doesn't seem to be much of a wait to see him. There are enough flights into San Jose that many people would be able to fly in & out on the same day, to avoid hotel expenses. You'd need to rent a car at the airport (or take a taxi or shuttle - about 12 miles), but there are some really good rental rates available at times.
See http://forums.phoenixrising.me/inde...kaufman-at-the-open-medicine-institute.32107/

 

[Strawberry]

@lazzlazz Thanks for the idea! And I do have a dear friend in the San Jose area I would love to visit. I might just do that, as I have decided (again) to ditch my doctor. Finances are tight right now, but once that settles back down I can start my ND again too. But Kaufman might be a good way to get a real diagnosis of what is going on, and then he can maybe communicate with my ND? A person could also rely on the BART instead of renting a car, although I never had issues driving in that area.

 

[lazzlazz]

@lazzlazz Thanks for the idea! And I do have a dear friend in the San Jose area I would love to visit. I might just do that, as I have decided (again) to ditch my doctor. Finances are tight right now, but once that settles back down I can start my ND again too. But Kaufman might be a good way to get a real diagnosis of what is going on, and then he can maybe communicate with my ND? A person could also rely on the BART instead of renting a car, although I never had issues driving in that area.

I think you'll be very happy with a decision to contact Open Medicine Institute (where Kaufman is). Note: BART does not extend down to Mountain View and I doubt public transportation from SJC to Mountain View is all that great. But you can check it out.

 

[Strawberry]

I think you'll be very happy with a decision to contact Open Medicine Institute (where Kaufman is). Note: BART does not extend down to Mountain View and I doubt public transportation from SJC to Mountain View is all that great. But you can check it out.

I have now read that thread about OMI and their website. I am sold!

Even though I have a completely different type than Jeff and gingergrrl in the OMI thread (long term, pos ANA speckle pattern no obvious start) I can still get help? Today is a bad day, and I am desperate for help.

 

[lazzlazz]

I have now read that thread about OMI and their website. I am sold!

Even though I have a completely different type than Jeff and gingergrrl in the OMI thread (long term, pos ANA speckle pattern no obvious start) I can still get help? Today is a bad day, and I am desperate for help.

Sorry Strawberry, I just saw your message. I asked the same question - I said I don't know that I have CFS (it turns out I do). They replied something along the lines of Dr. Kaufman focuses on difficult-to-diagnose diseases.

 

[lazzlazz]

I have now read that thread about OMI and their website. I am sold!

Even though I have a completely different type than Jeff and gingergrrl in the OMI thread (long term, pos ANA speckle pattern no obvious start) I can still get help? Today is a bad day, and I am desperate for help.

Hi Strawberry,
I wanted to ask whether you ever went to OMI & how things turned out. Sorry about the long delay; the last 2 years have been a bit hectic for me.

 

[actup]

I have had poor luck with most physicians in the Seattle area. Avoid Polyclinic downtown as the specialists are all dismissive of me/cfs patients. The Rheumatology and Physiatric clinics there won't accept any me/cfs patients. The Everett clinic is the same though their Rheumatology does see me/cfs patients.

I have found an excellent rheumatologist in Bellevue. Her name is Dr Sue Romanick and her # is:425 462 2531. She is currently booked out to February. The wait is worth it as she gives you as much time as you need. She specializes in care of me/cfs and fibromyalgia patients.

 

[Strawberry]

Hi Strawberry,
I wanted to ask whether you ever went to OMI & how things turned out. Sorry about the long delay; the last 2 years have been a bit hectic for me.

Hi @lazzlazz I did go to OMI, exactly a year ago. I'm very glad I went, but I still feel the same. He tried the usual, B12, antivirals, antibacterials, but feel no better or worse. He figured out I also have MCAS, so we have upped my antihistamines which does help in that matter, but not the fatigue, PEM, and burning muscles. I hope things get better for you soon!

@actup Thank you for the tip, will she see patients even if I don't have anything rheumy-ish? I went to a rheumatologist at the Polyclinic, but that went no where. I only have joint pain in my hands, and that is only if I don't stay on my diet (low carbs low sugar). I don't want to drive to Bellevue, but won't write her off either.

I need a new doctor and this lack of understanding doctors here is frustrating. I at least like my current doctor, but he is clueless and close to retirement. I think I will ask him for a referral for a young doctor that is willing to do some research and not tell me to get psych help! I will train someone myself. My close options are UW medicine and Franciscan/Highline hospital. Not the best choices at all, but I'll cross my fingers for Franciscan. UW all ready gave me a bad experience, on top of the fact that their CFS clinic is psychology based. grr. I will post here if I have good luck with training someone!

go hawks

 

[actup]

Hi @lazzlazz I did go to OMI, exactly a year ago. I'm very glad I went, but I still feel the same. He tried the usual, B12, antivirals, antibacterials, but feel no better or worse. He figured out I also have MCAS, so we have upped my antihistamines which does help in that matter, but not the fatigue, PEM, and burning muscles. I hope things get better for you soon!

@actup Thank you for the tip, will she see patients even if I don't have anything rheumy-ish? I went to a rheumatologist at the Polyclinic, but that went no where. I only have joint pain in my hands, and that is only if I don't stay on my diet (low carbs low sugar). I don't want to drive to Bellevue, but won't write her off either.

I need a new doctor and this lack of understanding doctors here is frustrating. I at least like my current doctor, but he is clueless and close to retirement. I think I will ask him for a referral for a young doctor that is willing to do some research and not tell me to get psych help! I will train someone myself. My close options are UW medicine and Franciscan/Highline hospital. Not the best choices at all, but I'll cross my fingers for Franciscan. UW all ready gave me a bad experience, on top of the fact that their CFS clinic is psychology based. grr. I will post here if I have good luck with training someone!

go hawks

Hi @Strawberry, I believe the Seattle area is a medical desert for pwme. The five clinics I've used ( Group Health, Everett clinic, UW, SCCA for bleeding disorder and currentlyPolyclinic) have all played the same game.

Act supportive initially and then severely ration care as in "oh you don't want that test done it will wear you out and we have no idea how to deal w the results". My current clinic will not refer me/cfs patients to Rheumatology. Every time I mentioned chronic joint pain my clinic mds insisted I had osteoarthritis for which there is no treatment. End of discussion such as it was.

I've had inflammatory arthritis symptoms and psoriasis for 12 years and was only diagnosed w psoriatic arthritis seven months ago by the outside rheumatologist you asked about in above post. So much permanent damage has been done to my feet, hands, shoulders and cervical area (per multiple MRIs) that I will need nerve ablation every 6-12 months to partially control chronic mod-severe pain in addition to opiates for really bad days. All because these arrogant bastards not only ignore me/cfs as a diagnosis but refuse to accept the possibility of co-morbidities. I continue to have PEM and classic me/cfs symptoms. In retrospect I wish they had just said it's all in your head at the beginning. Then I wouldn't have wasted so much time dealing with all of their game playing.

The PEM is still there along with the flu syndrome. My current rheumatologist believes I have me/cfs in addition to the inflammatory arthritis due to the severity of PEM, flu and fatigue symptoms. I'm keeping an open mind as we work through the hiearchy of treatments. So finally to answer your question (sorry it took me so long but I was ripe for a rant) Dr Sue Romanick specializes in treating us medical system rejects w me/cfs and fibro. She's wonderful and spends adequate time with her patients. In my opinion she's a very good diagnostician. Best of luck in finding water in this desert. I'm not usually this sarcastic. After all I do have to sleep ;-/

 

[Strawberry]

Hi @Strawberry, I believe the Seattle area is a medical desert for pwme.

That, unfortunately, is SO true! I used to think Seattle was so medically advanced. Maybe that can change here in the future with all the work being published. At least that is my dream, that doctors here will quit behaving like Neanderthal. Ugh.

Sorry to hear about your arthritis issues and how it has caused you so much harm. Please keep us posted in this thread from time to time, I think it is good to keep this thread alive at times.

 

[Learner1]

I'm familiar with 3 of the NDs in Seattle previously listed, and have gotten very good care from 2 of them, though I'm still sick...

However, I have my LTD company breathing down my neck wanting me to apply for SSDI. Looked into that, but one needs to be under the care of an MD, which I'm not.

I have enough lab work that matches Armstrong's and Naviaux's findings, my immune system isn't working and I have 5 smoldering chronic infections, so its not psychiatric.

It dawned on me that maybe I need to find a CFS oriented immunologist in Seattle. Have any if you found one? I'm on Montoya's wait lis, but it's a long one... and I saw an infectious disease guy in Bellevue who couldn't read my labs and was useless, even though I was sleeping on his floor...

And is the PNW chat group still active? How do I join, please?

 

[Strawberry]

@Learner1 I think @ahimsa is the group owner. It is very quiet, but there is some useful information.

 

[Learner1]

Thanks!!

 

[ahimsa]

I sent @Learner1 an invitation to join the group. Hope it worked!

 

[Nani52078]

I sent @Learner1 an invitation to join the group. Hope it worked!

Hello! Is it possible to get an invite to the PNW group? I am a newbie here and looking for local resources. The information I've read just on this thread so far has been super helpful! Thanks a bunch!

 

[ahimsa]

Hello! Is it possible to get an invite to the PNW group? I am a newbie here and looking for local resources. The information I've read just on this thread so far has been super helpful! Thanks a bunch!

Hi @Nani52078 !

I will send you an invite to the group. Be on the lookout for it.

However, there is still very little discussion on the group. @Learner posted a message but the only responses were my own.

I'm not sure how to get more people to join in and my own posts are few and far between. Maybe some other group members have ideas on how to get more traffic?

Or, if you don't need the features of a private group, maybe it's better to just post in the main forum and put the location in the subject line.

Good luck!

 

[Strawberry]

I'm not sure how to get more people to join in and my own posts are few and far between. Maybe some other group members have ideas on how to get more traffic?

It would be nice if we had notifications for new posts, like the red spot for "alerts" or "inbox" notification but above the "groups" tab. I always forget that the group section is even there.

I agree with putting Seattle in the title

 

[ahimsa]

It would be nice if we had notifications for new posts, like the red spot for "alerts" or "inbox" notification but above the "groups" tab. I always forget that the group section is even there.

I forget about groups, too. I thought there used to be alerts for new posts? But I'm not getting any.

Either that option changed somewhere along the way (there was a big forum change a while ago), or I'm remembering that wrong (par for the course), -OR- there is an option but I don't have the correct preference set.

I just looked in one section of the account preferences (your account -> settings -> alert preferences) and did not see anything that applied to groups. So I'm stumped. I'm guessing there are no alerts that apply to groups.

 

[Valentijn]

I forget about groups, too. I thought there used to be alerts for new posts? But I'm not getting any.

They only seem to work for group threads that you've posted in.