Discussion in 'ME/CFS Doctors' started by EMilo, May 19, 2013.
I can help you . My junk email is :
gargan4130 at yahoo dot com
I'm in Mt Vernon . John
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I saw Dr. Marty Ross in the Seattle area and he was very open to listening to what I had going on. He seemed more like a lyme doctor to me and didnt really understand Post Exertional Malaise. I have yet to find a doctor that understands PEM and how doing too much on a certain day can cause a PERMANENT worsening of energy levels.
Anyway, he uses supplements that he has had success with. He is also knowledgeable about what other doctors to see. He knew he couldn't help me and referred me to a neurologist, who kept me on the klonopin I need to be able to function. So I think he is worth a shot. He is empathetic.
Hello @formerpokerplayer ! I found this thread while searching for the Harborview Chronic Fatigue Clinic (which is now UW medicine) which my PCP wants me to contact. I saw your comments about Dr. Marty Ross - and went to his website. I liked what I saw in his intake forms. Are you still seeing him at all? I have not had any lyme testing done - so I don't even know if that could be the cause of my symptoms.
I have all the symptoms of CFS - only they are a bit more **mild** than most of the folks I read about in this forum. Although I can no longer work full time - I am able to have 3 to 4 "good days" per week as long as I take care to rest and to have plenty of time to myself. PEM is a big issue. My body/joint/muscle pain (especially neck - bilateral) has been on-going for over 4 years - and I have had major sleep disturbances for 6 to 7 years (severe night sweats & vivid exhausting dreams).
This is just a brief overview - but I wonder if you feel it might be worth me seeing him - based on your interaction with him and his clinic?
Thank you so much!!
Thank you @EMilo & @WillowJ - my PCP has asked me to contact the Harborview Chronic Fatigue Clinic for consult, so this is very helpful information !!
@PallasKat Please check back here after your appointment and let us know how it went! If they have changed over time, it will be nice to know.
A year or so ago I had thought about switching to UW Medicine, but the doctor they assigned me was very young, and extremely arrogant. Actually quite derogatory.
There is a local CFS seminar coming up in October, so I am crossing my fingers that the wind will change direction after this. The one Prof Edwards went to was inspiring!
@PallasKat, there are so many fine practitioners (NDs, MDs) in the Seattle area, I wouldn't waste my time or money with the Harborview/UW Medicine people (Harborview has been under management by the UW for decades, it's just a name change).
The referral you received might have been generic, and not related to any actual help you might receive from Harborview/UW Medicine.
I'd hate for you to go through the same thing the OP did. The clinic has been in operation since the '90s and I've never heard anyone say they were glad they went.
If you've read through this entire thread then you probably saw the link to this thread:
and maybe you saw my post here with various practitioners listed:
I would try to find someone with a lot of experience treating CFS/ME/FM and maybe who uses some of the modalities that interest you (acupuncture, IV vitamins, etc.).
BTW, you can still have CFS/FM and function as well as you do. I worked after I came down with CFS until my body gave out and couldn't recover from every virus that came along. I'm now housebound.
@at - Sure is a lot of Washington CFS people . The best Cfs Doctors are the ones you do not go to .
There's one medication that boosts your immunity . I've had good luck via people on this site . But , it seems
most of the time people only listen to what they want , or expect to hear . It's just not that simple.
@ AT It's just a junk email . That's what it's there for
@ AT Yes , an old girlfriend worked at Harborview . I think they just changed the name over to UW about 5 months ago
As I said before, Mr. Ross knew he could not help my symptoms and referred me to another doctor who has prescribed me a drug that helps me. He is worth a shot. I think your symptoms match what he may be able to help. Don't be afraid to go to a doctor, but don't be afraid to tell a doctor "NO, I DONT LIKE WHAT YOU ARE SAYING", also.
@formerpokerplayer How long have you been seeing him? I just found some reviews that aren't so glowing after a time. It sounds like initially people think he is great, and then he gets frustrated and "fires" his patients who are then left wondering how to get off the drugs he prescribed.
Hello @formerpokerplayer, @KENNY-SILVERS, @CFS_for_19_years & @Strawberry ~
Thank you all so much for your responses!
This is interesting: I tried calling Dr. Marty Ross this morning but their outgoing message didn't allow me to actually leave a message (!) then I tried to email them and their email address came back undeliverable (!?) - so I tried to contact them via facebook (as they suggested on their website) and their facebook page doesn't seem to have been completed (!!??).
I work at from home doing on-line marketing and graphic design - (sometimes for a local pain clinic) - I'm pretty tech savvy - so I found this to be pretty strange even though it is a Saturday. Maybe it is their way of not taking any new patients
I am glad to have the additional info about Harborview/UW - I have a WONDERFUL family doc who wants me to look into the program....so, I am going to call them, speak to a referral coordinator, and see what my gut tells me. I will let you all know how it goes.
Thank you again for all your input and support....It is incredibly helpful to be on this forum and learn from everyone.
@PallasKat @formerpokerplayer @oc100 @CFS_for_19_years @EMilo
Has anyone had any luck in the last 6 months? I did a google search, and stumbled on this thread. I had forgotten it existed, and was surprised to find that I even posted a few times. Gotta love it!
@WillowJ Did you ever find that list of Seattle docs?
I hadn't looked, as I didn't realize anyone wanted this. I didn't meet or call any of them, as I had decided Seattle area was too far for me, and it was a few years ago so not sure anyone would be in the same area, so I thought it was low-value information.
There were two or three NDs on the list, IIRC--at least one of which has probably already been mentioned. I expect they are in an email or file somewhere, and I could track them down with a few hours' work (spread over however long it takes). Was that something you needed?
BTW, I did hear one report of someone having a good experience at Harborview, years ago, but they think they were misdiagnosed and they were a mild patient comparatively. They said people were nice.
No, please save your energy! Not needed, especially for a few hours work. I thought it was something readily accessible.
I do have a good ND, but insurance doesn't pay NDs so it comes out of my pocket. I was hoping to find an MD closer than the OMI in California that would be willing to work with OMI's requests/diagnosis.
Thank you Willow!
Ok....so, at long last, here is an update on my experience at the CFS clinic at Harborview / UW. If you are considering trying to get an appointment....
......See if you qualify for the Fibromyalgia Research Program at the UW FIRST !!!
If you qualify, (and I believe most people with CFS / ME would), you will get the EXACT same care AT NO COST to you or your insurance.
You have to be willing to participate in a double-blind study of medication (Tramadol or placebo) paired with either cognitive behavioral therapy (CBT) or health education, which lasts several months.
They do a physical examination of tender-points etc. and often send participants for extensive blood draws to rule out the usual factors - (but with me, they did not, I passed the tender-point exam with flying colors .
I was assigned 8 weeks of CBT - which was absolutely fantastic. I was also, without doubt, given the Tramadol not placebo (although even the staff never know for sure) and it improved my symptoms VASTLY.
I got my life back, and learned a whole new set of coping skills at the same time. As I was weaned off the meds at the end of the program, the staff was there for me all the way. They are kind, professional, communicative and flexible.
After I finished the Fibro Study, I discovered (through my own research) that edible medical cannabis was very very effective as a sleep aid for me. I have a tiny bite of a high CBD baked good or chocolate bar every evening - and I can finally sleep blissfully through the night. My dreams are calm. My night sweats have diminished, I wake up refreshed and I have no adverse effects in the morning. My pain has not gone away, but it is so much more tolerable. I have more energy than I have had in 6 years. I am better able to cope with crashes and PEM so much better.
Meanwhile, all this time, I was waiting to get into the Harborview CFS clinic - which was ARDUOUS.
Looooooong story short: It took 7 months to actually see a doctor. When I FINALLY did see a doctor, I thought he was very focused, very curious, well-informed, kind etc. BUT.... he confirmed that everything I was doing, the edible cannabis, lifestyle changes and all that I had learned from the good people at the Fibromyalgia Research Program, was absolutely on the right track.....for me.
To sum it up: unless you are willing to wait a crazy amount of time....fill out a lot of paperwork...get hopelessly lost in the labyrinth of the Harborview facility (no one in the building knows where the CFS clinic is...and there is no signage) and be willing to tell your story repeatedly to various staff BEFORE you see the doctor.....skip it completely.
Oh...and because I do not have insurance (by my own choice...another long story) I was billed approximately $2,000.00 for two appointments (first one you do not see a doctor) - and the extensive blood draws - labs were $1,200.00...Yikes, an under-earner like me will have a lot of trouble paying that off.
I really hope this helps someone make a choice about who to see in Seattle
@PallasKat How are you doing? Still doing well from the fibromyalgia research program?
Hi Strawberry - thank you for asking!
I'm not doing so great this summer, mainly because of over-commitments with work, visiting friends & family. Everyone decided to come to Seattle from out of town at the SAME TIME this year, so I had way way way to much obligatory socializing. Plus, as you know, it got pretty hot for long stretches, which really didn't help with inflammation. My sleep is really bad. I have been referred to the Swedish Sleep Clinic, but they can only rule out apnea with my insurance (Medicaid / Community Health Plan of WA) and my neurologist is 90% sure I do not have apnea.
Sadly, the Fibro program is done for me - it ended several months ago. The coping tools I came away with were really great, but I wish I could continue with the CBT and medication. I may approach my PCP about taking Tramadol 2 weeks on and 2 weeks off (to avoid addiction) - it seems to be the only medication that really allows me to be active on a consistent basis. I have yet to figure out if I can get regular CBT with my plan...as everyone knows, trying to understand Medicaid is like a full time job in itself.
How are you doing? Have you had any luck finding a good doctor or clinic?
I have decided to see Dr Kaufman at the OMI. I just don't have the energy to find a local doctor that can help. When I can afford it I go see my ND at the Tahoma clinic, but they haven't helped me yet.
So sorry to hear the fibro program has ended for you and just left you hanging! My sister did the sleep study at Swedish, but it didn't provide anything that actually helped her sleep. I have decided a sleep study is low on the totem pole for now and won't do one.
Hang in there!
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