Seattle, WA: Harborview Chronic Fatigue Clinic

[oc100]

I completely agree Kenny! I am taking tons of supplements and vitamins, and don't really want to try any more prescription meds unless a new miracle cure comes along, as most meds have given me more difficulty than helped. The problem is I was finally approved for disability last March which has to be renewed every 3 years (I believe) which means I have to be followed by a primary care MD to document my illness and show I am under the care of a doc, or I may loose it. Hopefully I will be well and able to work by then, but I never expected to be sick this long so I won't hold my breath.

 

[oc100]

Also, I have never had any testing other than basic blood work, so I think it would be a good idea to get more thorough testing and possibly try immune modulators or antivirals. Does anyone know of an MD in the Seattle area that might be able to help?

 

[KENNY-SILVERS]

Most Internal Medicine doctors seem good . All the ones I have had were really good . Contrary to popular belief ,
Tests do not cure Cfs . Things like Grapeseed extract , Grapefruit seed extract and Colloidal Silver . And the Candida
killer . These are the things that actually do something positive . The Colloidal blew me away . I've had sore throats since 1987 . The C/S Controls the problem.

 

[oc100]

Obviously, tests do not cure CFS. However, it may be good to know if I have high viral titers or how immune stem may be functioning to possibly try an antiviral or immune modulator. The one Internal Med doc I saw (although not in WA) was awful. Did no blood work, no exam, told me to "go home and sleep and I would get better, and the only people who don't get better are people who don't want to." Sore throats are the one symptom I don't have very often, but thanks for respondng!

 

[Valentijn]

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.

I see Dr. Deichert when I'm back in Seattle ... his info is at http://www.seattlehealingarts.com/pracs/prac_deichert.htm . He's in North-ish Seattle, up by 65th and Roosevelt. I live in the Netherlands, so sometimes I call him via Skype instead of having a normal appointment.

We made some very good progress with my orthostatic intolerance problems, and he's been quite helpful for some other problems. Appointments are a good length (60 minutes for the first, then 30 afterwards, I think), and he really tries to solve problems, rather than avoid them.

He's a full licensed Naturopathic Doctor (pretty much the same as being an MD, in Washington State), and understands a lot about supplements and such, but is also pretty knowledgeable about conventional medicine.

 

[oc100]

Thanks for responding! From what I have been told, NDs don't take insurance and can't fill out disability/social security paperwork, so I need to see an MD, unfortunately.

 

[KENNY-SILVERS]

Obviously, tests do not cure CFS. However, it may be good to know if I have high viral titers or how immune stem may be functioning to possibly try an antiviral or immune modulator. The one Internal Med doc I saw (although not in WA) was awful. Did no blood work, no exam, told me to "go home and sleep and I would get better, and the only people who don't get better are people who don't want to." Sore throats are the one symptom I don't have very often, but thanks for respondng!

Sounds like that Doctor needs to make a appointment with Doctor Phil . I hope you do good - John

 

[KENNY-SILVERS]

Thanks for responding! From what I have been told, NDs don't take insurance and can't fill out disability/social security paperwork, so I need to see an MD, unfortunately.

Ok I gotcha - I kept all my medical records since 1987 w/ Cfs . I think I have graduated to the Mentally Ill category
so maybe I don't need the records after all !!!

 

[oc100]

Haha, I'm right there with you! If it isn't the brain fog, dealing with the rest of this stuff is enough to make one loose it. Wow, 1987, that's quite the long road. Hope the worst is behind you. Thanks again for writing back.

 

[August59]

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.

I'll give up my Klonopin when they find a cure for this disease. I have taken 3 different times over the last 10 years and I have yet to have a hard time coming off of it as long as I tapered down to .125mg for a few weeks to a month before stopping. Gabapentin for a few weeks afterword help, L-theanine help as well did benedryl. I never had to take the .125mg for more than a month or two.

 

[lazzlazz]

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.

This is incredibly useful information as I was thinking of going to this clinic. I won't be now. Thanks for taking the time to share your experience, and thanks to others who have added to this thread. It's incredibly disappointing that the clinic would work in such a manner, esp. with this illness.

 

[KENNY-SILVERS]

Haha, I'm right there with you! If it isn't the brain fog, dealing with the rest of this stuff is enough to make one loose it. Wow, 1987, that's quite the long road. Hope the worst is behind you. Thanks again for writing back.

Thanks , I'm looking forward to it getting worser . As you can see , my somewhat less than eloquent grammar is quickly depreciating .

 

[KENNY-SILVERS]

I'll give up my Klonopin when they find a cure for this disease. I have taken 3 different times over the last 10 years and I have yet to have a hard time coming off of it as long as I tapered down to .125mg for a few weeks to a month before stopping. Gabapentin for a few weeks afterword help, L-theanine help as well did benedryl. I never had to take the .125mg for more than a month or two.

Sounds like your Psychiatrist learned his trade from watching BOB NEWHART re-runs . I'd give him a "Dr. Grabow" Corn cob pipe and a bill for wasting your time . Anyone can become a Doctor .

 

[KENNY-SILVERS]

This is incredibly useful information as I was thinking of going to this clinic. I won't be now. Thanks for taking the time to share your experience, and thanks to others who have added to this thread. It's incredibly disappointing that the clinic would work in such a manner, esp. with this illness.

 

[KENNY-SILVERS]

Chronic Fatigue Clinic would be a misnomer . In hindsight , the surveys she was doing was actually a really
good idea . She was probably doing Stat Algorithms via personality types . I would like to see the results . I agree with her on that idea completely . I do not think it is ethically correct the charge patients for experiments . I wouldn't be
surprised if she had a bottle of Jack Daniels in her desk drawer .

 

[SDSue]

I went to the Cfs Clinic in Seattle . The Doctor was nuttier than a Stuckeys Log .
Sounds like your Psychiatrist learned his trade from watching BOB NEWHART re-runs .

Careful, your age is showing And I guess mine is, too, now!

I'm curious about Klonapin. My brain is a mess - constant buzzing and vibrating and pain (and no, I'm not nuts. Thanks for asking!) It's GOT to be inflammation, as it's unlike any HA I ever had prior to falliI wonder if Klonapin would help. This whole disease would be a helluva lot easier to deal with if I could just silence my brain.

Anybody using it? How much? How often? What symptoms does it help? @August59, would you mind sharing your experience? Thanks.

 

[KENNY-SILVERS]

Careful, your age is showing And I guess mine is, too, now!

I'm curious about Klonapin. My brain is a mess - constant buzzing and vibrating and pain (and no, I'm not nuts. Thanks for asking!) It's GOT to be inflammation, as it's unlike any HA I ever had prior to falliI wonder if Klonapin would help. This whole disease would be a helluva lot easier to deal with if I could just silence my brain.

Anybody using it? How much? How often? What symptoms does it help? @August59, would you mind sharing your experience? Thanks.

When I first got ill . The headaches were like none other . Are you taking anything that may cause this buzz feeling ?
Stress or diet may be causing these problems . Or not enough sleep . I would drink some coffee . Get a bottle of
Sovereign Silver (Colloidal) , Candida Killer , and a Refrigerated Probiotic such as Raw Biotics . I would not eat dairy or meat . They contain hormones and antibiotics . 80% of illnesses and your immune system are closely related to
what is going on in your stomach .

 

[SDSue]

When I first got ill . The headaches were like none other . Are you taking anything that may cause this buzz feeling ?
Stress or diet may be causing these problems . Or not enough sleep . I would drink some coffee . Get a bottle of
Sovereign Silver (Colloidal) , Candida Killer , and a Refrigerated Probiotic such as Raw Biotics . I would not eat dairy or meat . They contain hormones and antibiotics . 80% of illnesses and your immune system are closely related to
what is going on in your stomach .

I'm starting to wonder if Melatonin is causing it? I've ruled out nearly everything else.

I have Sovereign 10ppm in my cupboard - I'm a bit nervous about it, as I already carry a huge metal load (mercury) and wonder if silver compounds all that? I gave up gluten over a year ago, and recently stopped dairy (great wailing and gnashing of teeth!!!) but feel worse if I don't eat meat.

Getting ready to attempt an extreme gut makeover with probiotics and herbal antibiotics. Yikes!

 

[KENNY-SILVERS]

Melatonin is a good call . 10 ppm is good . I started
with Colloidal , and it removed my sore spot in my throat (infection) . This link makes perfect
sense . I had my Tonsils removed in 1988 . With loads of anti-biotics . This lady here has her act together .
I figured the blood tests would be more expensive than the Candida killer and Probiotics . Plus the blood
test could be inaccurate . I suppose . I would try a liver cleanse on the mercury . I want to try the liver cleanse next .

http://www.mindbodygreen.com/0-8376/10-signs-you-have-candida-overgrowth-what-to-do-about-it.html

 

[lazzlazz]

Hello,
I am new to Phoenix Rising and really need some advice/help. I have had severe ME / CFS for 4+ years now,
...
Can anyone help by recommending a primary care physician who might be able to help me? Thanks so much.

Did you find this thread: http://forums.phoenixrising.me/index.php?threads/doctor-near-seattle-wa.20028/