Doctor near Seattle, WA?

[WillowJ]

@ahimsa and @WillowJ
I can't see a way to join, could you please do it for me? I don't seem to be able to figure out how to PM here either, so much to figure out still.

Thank you in advance!

Invitation sent. You will find the PM section at the top, under the heading, "Inbox". (used to be "Conversations" but they must have changed it). You should have a red number now, as I have sent you a message (just saying how to find the invitation--at the top of the My Groups page).

 

[EMilo]

@ahimsa and @WillowJ can you add me, too. I thought I was a member, but don't see any threads.

@Strawberry what sort of doctor are you looking for specifically? I've seen a bunch in Seattle so might be able to help.

 

[ahimsa]

@EMilo, I just sent you an invitation to join the Pacific Northwest group.

I don't remember what it looks like to the user getting the invitation -- an alert, perhaps? -- but you should get some sort of notice where you can respond and join the group.

 

[Strawberry]

@EMilo, I;m not really sure what kind of doctor I need. I just found out I can self refer on my company's new insurance plan, so I can eliminate my doctor for that part. I guess someone that can actually diagnose if I truly have CFS, or if I am just chronically fatigued. But then, what does it truly mean to have a CFS diagnosis? Is it viral? Do I need a muscle punch? I guess I am stumped at the wide possibilities of causes.

 

[WillowJ]

@EMilo, I;m not really sure what kind of doctor I need. I just found out I can self refer on my company's new insurance plan, so I can eliminate my doctor for that part. I guess someone that can actually diagnose if I truly have CFS, or if I am just chronically fatigued. But then, what does it truly mean to have a CFS diagnosis? Is it viral? Do I need a muscle punch? I guess I am stumped at the wide possibilities of causes.

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.

ME/CFS has immune dysfunction and neurological features. It is most likely a group of related diseases (as asthma, Lupus, etc., are) rather than being one thing with a single cause and single treatment. It often is associated with infectious onset but it is not clear whether infections are related to cause, and not everyone has chronic or reactivating infections, though some do.

You should do what makes sense to you.

If you do get a CFS diagnosis from someone who is qualified to make and manage that diagnosis, this should come with some idea about what the doctor thinks is contributing to your symptoms in your particular case (e.g. infections, dysautonomia, insufficient sleep quality...), and some suggestions for treatment (at least sensible symptom management and treatment of any complicating or comorbid conditions like dysautonomia, migraine, or asthma).

 

[WillowJ]

@EMilo @ahimsa the group invitations show up in the header when navigating to Groups or My Groups (I forgot which, but it is one of these)

 

[Strawberry]

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.

Willow, thank you for the names. I have decided to start a list of all the names I have found in the threads for Seattle docs, and will add these also. Then on the days I have a brain, I will make notes.

 

[WillowJ]

Willow, thank you for the names. I have decided to start a list of all the names I have found in the threads for Seattle docs, and will add these also. Then on the days I have a brain, I will make notes.

All of those are out of area (e.g. California, Utah.... Florida, New York). You can probably find more names on a thread elsewhere (I can't think what to search for, right now).

 

[Strawberry]

Travel isn't out of scope, although I really would like to find a local GP as I know there are good specialists locally. As long as dumb things haven't been missed, which so far I believe they have been. Like my heart murmur, my kidney damage, brain injury, or any other odd ball thing that could have been glossed over. It is always interesting reading this site, someone posts an article, and I say "hey, that could be my issue..."

Like getting an EKG, and the doctor saying there was a wiggle that usually means blood leaking, but then blaming all heart issues and fatigue on anxiety. I HAVE had anxiety and recognize it. I don't feel anxiac at all now that my daughter is not a small child. Maybe just mild anxiety on the rare times I have to do something completely out of my comfort zone. And I even proved I didn't have anxiety by taking a test.

Or complaining of my chronic sore throat and them saying it is just acid reflux. I do get acid reflux, and that feels completely different. This feels like strep or tonsillitis, not acid burn or post nasal drip.

Oh here I go complaining. Guess I should pack up and go home.

So glad I came to this forum, I just wish I had more time for posting and asking questions.

 

[WillowJ]

Oh here I go complaining. Guess I should pack up and go home.

So glad I came to this forum, I just wish I had more time for posting and asking questions.

complain all you like. We all understand.

I wish I had more energy to read and write more posts, too.

 

[Daffodil]

I think there is a dr. susan marra in seattle..LLMD..might be open minded to other things..

 

[Strawberry]

Thanks @Daffodil, I printed her information. Her website says she is a PLLC, and I don't know what that is or what they are qualified to do in Washington State. I will research that tomorrow and figure out what the difference is between her and my current ND. Looks like she is a Lyme doctor.

It is almost time again for me to pack up and head home, but I will try to ask a quick question.

What do all of you think would be the smarter thing to do? Find a local doctor to further testing? Or just go straight out of state to an ME/CFS doctor and find out if that is really what I have? I want to say I don't have ME/CFS, because it is just plain scary, but I really do match a majority of the symptoms.

Thanks @WillowJ for the freedom to whine!

 

[WillowJ]

[quote="Strawberry, post: 503554, member: 16086"

What do all of you think would be the smarter thing to do? Find a local doctor to further testing? Or just go straight out of state to an ME/CFS doctor and find out if that is really what I have? I want to say I don't have ME/CFS, because it is just plain scary, but I really do match a majority of the symptoms.

[/quote]

It's hard for us to tell you what to do. Symptoms overlap between different diseases. You should think it over carefully, consult if you want to with people important to you in your life especially if they have knowledge or will be affected by your choice, then decide what to do first and go for it.

There should be better diagnostics and more logical ways to make treatment decisions for ME/CFS in a few years, but even now there are things one can do which are established medicine (treat dysautonomia, for instance), and other things somewhat experimental that one can try (sometimes in clinical trial settings).

 

[WillowJ]

[quote="Strawberry, post: 503554, member: 16086"

What do all of you think would be the smarter thing to do? Find a local doctor to further testing? Or just go straight out of state to an ME/CFS doctor and find out if that is really what I have? I want to say I don't have ME/CFS, because it is just plain scary, but I really do match a majority of the symptoms.

[/quote]

It's hard for us to tell you what to do. Symptoms overlap between different diseases. You should think it over carefully, consult if you want to with people important to you in your life especially if they have knowledge or will be affected by your choice, then decide what to do first and go for it.

There should be better diagnostics and more logical ways to make treatment decisions for ME/CFS in a few years, but even now there are things one can do which are established medicine (treat dysautonomia, for instance), and other things somewhat experimental that one can try (sometimes in clinical trial settings).

 

[zzz]

What do all of you think would be the smarter thing to do? Find a local doctor to further testing? Or just go straight out of state to an ME/CFS doctor and find out if that is really what I have? I want to say I don't have ME/CFS, because it is just plain scary, but I really do match a majority of the symptoms.

I think that the best thing to do would be to find out first whether or not you have ME/CFS. The process is quite straightforward, and you can do it yourself. The best definition of ME/CFS currently available is the International Consensus Criteria 2011. A short form, one page check list can be found in Appendix 1, on page 25. If you meet all the requirements of this rather stringent definition, you can assume you have ME/CFS, and seeing an ME/CFS specialist would seem to make the most sense. If instead you meet the definition for Atypical Myalgic Encephalomyelitis, then it's harder to say; perhaps a more complete explanation of your symptoms would make it clearer. However, even if you do meet the full definition of ME/CFS, you clearly have other problems that are not typically part of this illness - for example, your kidney damage and brain injury. If you have ME/CFS, the ME/CFS specialist might be able to either help with those, or else refer you to someone who could.

If you don't meet the requirements for either Myalgic Encephalomyelitis or Atypical Myalgic Encephalomyelitis, then it wouldn't seem make sense to see a CFS specialist. However, your condition is complex enough that it is probably beyond the capabilities of local doctors to deal with. You might want to consider someplace like the Cleveland Clinic, that has various branches, and which is a center of excellence in medical care. Stay away from the Mayo Clinic, though - they do not have a good record when dealing with CFS or related illnesses.

 

[Daffodil]

Thanks @Daffodil, I printed her information. Her website says she is a PLLC, and I don't know what that is or what they are qualified to do in Washington State. I will research that tomorrow and figure out what the difference is between her and my current ND. Looks like she is a Lyme doctor.

It is almost time again for me to pack up and head home, but I will try to ask a quick question.

What do all of you think would be the smarter thing to do? Find a local doctor to further testing? Or just go straight out of state to an ME/CFS doctor and find out if that is really what I have? I want to say I don't have ME/CFS, because it is just plain scary, but I really do match a majority of the symptoms.

Thanks @WillowJ for the freedom to whine!

PLLC? cannot find what that means....whenever i search, it brings me to accounting sites lol

i think you can go to any old local doctor and ask for some tests to determine if you have CFS. someone on this board could probably tell you which tests to ask for: viral titres, cytokines NK cell function, lyme, etc.

if you want confirmation and treatment, i would definitely head to Reno to see Dr. Kenny DeMeirleir the next time he is there, which will be early November. earlier you treat the better - trust me on this.

 

[Daffodil]

looks like PLLC makes her a corporation....might have something to do with liability? I saw this answer on the internet:

A Professional Service Corporation or PLLC is intended for doctors, lawyers, dentists, architects, and other professionals who must have a license to engage in their work. Some professions are required to form Professional Service Corporations if they are going to provide services through a corporation.
Professional service corporations are formed to give professionals the benefits of a corporation, while not altering the law involving liability of the individual licensed person

 

[Strawberry]

@zzz and @WillowJ I don't want to take this thread off course, so I will reply in my own thread.

@Daffodil How funny, you would think I would have recognized (P)LLC. Oh well! Thanks for that research, and I will still look into seeing if she can do any more than my current ND.

 

[CFS_for_19_years]

Ditto what lazzlazz says. I need a doctor in Seattle area also. I have a naturopath that I am trying, but in Washington State naturopaths are very limited. So I need a new gp doctor that actually will help me.

I don't know if Dr. David Buscher, MD will be someone's gp, but he's been very popular amongst CFS/ME people since the '90s. There's no insurance info on his website.
http://www.drbuscher.net/index.php

I did see Dr. Ralph Golan, MD for several visits in 2007 to help detox from heavy metals and prepare for amalgam removal. He's very expensive and doesn't take insurance. He will not be anyone's gp, he just wants to help treat people who haven't been helped by the traditional medical establishment.
http://ralphgolanmd.com

While staying up late one night I compiled my own list of providers I'd consider seeing. I'm working on some other issues with allopathic doctors at my HMO first, so I may contact one of the following in the future when things have settled down a bit. Some of my criteria were ease of access (proximity, parking, avoiding traffic), hourly rates, testimonials and stated range of practice skills. I haven't seen any of them in person yet. I live in North Seattle and that influenced how I made my list.

Dr. Brenden Cochran ND
http://www.interactivehealthclinic.com/about-interactive-health-services/doctor-brenden-cochran

Dr. Jeff Harris, N.D.
http://jeffharrisnd.com/index.php?option=com_frontpage&Itemid=1

Dr. Kimberly Iller, ND, LAc
http://functionalmedicinenw.com/Home.html
(EcoClimber also mentioned her in an earlier post)

Dr. Dan Labriola, ND
http://www.nwnaturalhealth.com/providers.html

Dr. Paul Anderson, ND
http://www.amsa1.com/staff.html

Dr. Lorina Shinsato, ND, LAc
http://www.primavitafamilymedicine.com/

Dr. Susan L. Marra, ND
http://drsusanmarra.com/
(already mentioned by Daffodil)

Dr. Michelle Turcotte, ND, NMD
http://www.connectedwellnesscenter.com/

Dr. Miroslawa Witalis, ND
http://www.drwitalis.com/index.html

I don't want to leave out this clinic:
http://tahomaclinicnorthseattle.com/ (North Seattle)
The original Tahoma Clinic was founded by Jonathan V. Wright, MD in 1973 and now has three locations. There are three naturopaths at the above location.
Here are the other two locations with doctor info:
http://www.tahomaclinic.com/staff (Tukwila, also known as Renton)
http://tahomaclinicredmond.com/about-us (Redmond)

 

[Strawberry]

@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!