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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. jsfm

    Drs/ studies in or around Seattle area?

    @EMilo - It was just ok. I did not appreciate her attitude nor how she spoke to me so I only saw her 3 or 4 times. I decided it wasn't worth it to be treated like I was stupid for asking questions. I hope your experience with her is better.
  2. jsfm

    Has anyone else ever been on Oxygen?

    I have used O2 previously for chronic daily migraines....unfortunately it never helped me. However, it is a common practice for people with Cluster Migraines. I for sure think the O2 may be beneficial since you are short of breath (SOB). Did you say that you take imitrex for your migraines?
  3. jsfm

    New to Famvir ... herx like reaction?

    Hi copik2. I just started taking acyclovir 800 mg 2x/day and feel horrible too. I am having some of the same symptoms as you: insomnia, increased pain, increased fatigue - like having to crawl up my stairs because I am so exhausted fatigue, increased anxiety, ect. I like you am still working so...
  4. jsfm

    Autopsy Options

    I used to work on an autopsy study here in Seattle through UW. I could inquire to see how they got that setup if that would help. I'm confident that it was through funding from the NCI.
  5. jsfm

    Drs/ studies in or around Seattle area?

    Good to know. I see her on Thursday and will let you know what I come up with.
  6. jsfm

    Update on markers and ...need to explore co-morbidities?

    I have a chronically elevated CRP and the doctor just ignores it. Has anyone had a doctor actually look for a secondary diagnosis for this elevated CRP?
  7. jsfm

    Drs/ studies in or around Seattle area?

    Thanks for posting the Seattle docs list. I have been "himming & hahhing" on scheduling with someone in Seattle because I haven't had much luck before. I just scheduled a new patient appointment with Dr. Iller. If you or anyone you know has seen Dr. Iller, let me know what you think. I will do...
  8. jsfm

    Seeing Dr. Klimas or going to the WPI?

    Thank you @Daffodil.
  9. jsfm

    Seeing Dr. Klimas or going to the WPI?

    I am a little late on seeing this post but I thought it is worth a try. By chance who do you see in the Seattle area that is willling to prescribe antivirals? I have not found anyone.
  10. jsfm

    Dr. Montoya no longer seeing patients/only research!

    I received a call today from one of the physician assistants who works under Dr. Montoya and she said she could see me as a new patient in as little as 2 weeks. If you are still interested in seeing a provider who works with Dr. Montoya you might want to give the office a call again. Best of luck!
  11. jsfm

    PNW Providers you have seen

    I know that many of you have written reviews on providers you have seen. I was wondering if we could list who they are or at least a link to the review in one place. Currently my PCP is: Risa Halford, ARNP in Tacoma at Advanced Women's Health She is an amazing provider. It is not that she...
  12. jsfm

    Famvir- my story

    What dose did your doctor start you out on? Mine started me out on 500mg 3x/day (total 1500mg). How high is your dose now? Are your titres any better? I am super nauseated and have loose bowels multiple times a day. I wonder if I should just take the 1500 mg all at night and maybe I won't feel...
  13. jsfm

    Famvir- my story

    Yesterday was day 1 on famvir. I don't expect to having to many side effects yet but I am scared I will get more sick before I get any better. I still work (very sedentary job with flexible hours) so I am scared that I will be forced to quit working. However, I have already been needing to slow...
  14. jsfm

    Seattle, WA: Harborview Chronic Fatigue Clinic

    Hi WilliowJ- I am in Seattle as well and am interested in finding out about the docs that you know in western Washington. Could you also tell me where to find the "Northwest Group" that you mention above? Sorry, I am still new on Phoenix Rising so I might not have explored everything yet...
  15. jsfm

    Clinical Trial for Fibromyalgia and ME/CFS Patients

    I have sent an email to the contact listed on Clinicaltrials.gov for this research trial. If I find out more information I will pass it along.
  16. jsfm

    Do I need an ME/CFIDS doctor?

    I just thought that I would throw out there that I tried to get into see Dr. Montoya and I am on a 4 year waiting list :(
  17. jsfm

    Doctor near Seattle, WA?

    Hello- I wanted to see if anyone had any updated recommendations for providers in the NW? I do see a ND who is great but I am more looking for an ARNP/MD to add to the clinicians that I see. Thanks!
  18. jsfm

    Dr Montoya and Valcyte

    I am not surprised, I am continued to look at other doctors I just don't know who to choose at this point. If I may ask who did you end up seeing?
  19. jsfm

    Dr Montoya and Valcyte

    I would for sure be willing to go see Dr. Lerner, however based on his website I wasn't sure that he was still seeing patients.
  20. jsfm

    Dr Montoya and Valcyte

    Hi all, I just got a huge let down on Friday. Dr. Montoyas office put me on a 4 year waiting list to see him. I felt so terribly let down as I have been following his work since about 2007 and this was the first time I could get a referral to go see him.