• Welcome to Phoenix Rising!

    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. zoe.a.m.

    MDs in Vermont...?

    Hi everybody, Does anyone have personal experience or a reference for a good ME/CFS specialist in Vermont? I thought I remembered a thread from maybe 5 yrs ago or so, but couldn't drum up any results other than in MA. Hopefully though, there are some members here living in VT. Diagnosis isn't a...
  2. zoe.a.m.

    What to try next with SIBO and methylation issues

    Hi Freya, I suspect I have many of the same issues you do but have been unable to get confirmation from specialists who can dx SIBO, etc. due to having no transportation. Several of the polymorphisms you mention look familiar as well, though it's been at least 6 months since I read any of those...
  3. zoe.a.m.

    Euthanasia

    Is there a thread specifically for suicide here?
  4. zoe.a.m.

    Can clonazepam (Klonopin) cause depression?

    My guess is that DSPS/D is a byproduct of ME, and then there are people who were perhaps healthy before who also tended toward being "night owls." I always used to stay up later than my peers, but it was not until the onset of illness that my 1am bedtime found its way to hours like 5am, 7am...
  5. zoe.a.m.

    Can clonazepam (Klonopin) cause depression?

    Lucinda, I think the answer is an absolute "Yes" to your question. It took me almost 8 years to work my way up to 2 mg a day, and that was when I really noticed that, (for some reason) at that dose, it started feeling like it was causing problems as well as helping with many. Truthfully, I...
  6. zoe.a.m.

    Housing Rights (??) for the disabled in WA state

    Thanks for the well wishes and suggestions. The drama continues unfortunately with another letter today from the "landlords" (really, I'm not sure these are living/breathing humans) stating that each additional day is $75 and that they plan to start construction on Oct. 1st. I was told slightly...
  7. zoe.a.m.

    Housing Rights (??) for the disabled in WA state

    Thanks Tania, I do think I will be taking the storage/temporary place fix if I can find the temporary place, which is proving to be really tough. Normally, it's a decent time of year to find summer rentals that aren't in use (the big Wooden Boat Festival finished last weekend and it's usually...
  8. zoe.a.m.

    Housing Rights (??) for the disabled in WA state

    It's been a while since I've done anything other than read here, but boy am I wondering about how other people have navigated housing issues with both CFIDS and MCS... After a year spent with miserable landlords making my MCS-friendly rental a not-so-great retreat, I was given notice that it's...
  9. zoe.a.m.

    LifeWise or Regence BCBS?

    Wow, this is a really interesting amount of information. As stressful as it is, I'm glad to see everything listed here so succinctly. II, I am in total agreement with your statements about the US vs. other industrialized nations and the premise and general workings of Medicare; it's really...
  10. zoe.a.m.

    LifeWise or Regence BCBS?

    Thanks for this info II, I don't doubt any of it is true. Insurance--"Hey Obama! I voted for you because you ran on the 'single-payer' platform, and you shouldn't have caved..."--is just a matter of the lesser evil and the lesser evil and the lesser evil ad infinitum. I can't believe either...
  11. zoe.a.m.

    Air purifiers for removing VOC's - looking for suggestions

    Hey, it ate my post! I'll try again. The noise level on 1 is barely audible whatsoever. About 10X more quiet than a white noise machine--really quiet. You might walk into a room with it on 1 and not notice it being on, I've left it on for a fews days without realizing it was still on when set...
  12. zoe.a.m.

    Air purifiers for removing VOC's - looking for suggestions

    I have the IQ Air Plus purifier (I think that's its name) which has 3 filtration systems and one is for VOCs. I am highly chemically sensitive and was not bothered by the plastic smells of this unit for more than a day once unpacked. I see they now have a more expensive serious VOC model on the...
  13. zoe.a.m.

    LifeWise or Regence BCBS?

    Hi WillowJ, Since you're in WA too, I guess you probably have similar options. Have you checked out Group Health? I was interested in them when I was looking for an individual plan almost 10 years ago, but they weren't in my area yet. I think they are a pretty solid company. Regence and...
  14. zoe.a.m.

    Changes with the migration to new boards

    Hi Janelle, I'm okay with changing to a private group - which I think is what this email is asking? This group has mostly flown below the radar for me, but maybe this will help me to get more familiar with it, I'd love to have more contact with members in my region. Please just keep me updated...
  15. zoe.a.m.

    Article: Take the ME/CFS Social Security Disability Survey

    Cort, When I got to question 22, I could not select more than 1 option, no problems with this until that question. Also, no evident save button or menu for returning to finish later - not sure if that is my browser? Thanks!
  16. zoe.a.m.

    Ways to get sleep. Methods, drugs, everything.

    I really have a lot of good things to say about "I Can Make You Sleep" (other than the title...). I found a used copy (with cd) for a few dollars and I find both parts to be really different from what I've come across/used before, and I've come across/used a lot of things that I really believed...
  17. zoe.a.m.

    How many have fever regularly? Any treatment that is most suitable for those who do?

    Hi Ocean, I know my B12 was in the 600s about 5 yrs ago or whenever it was first tested. When I finally got a workup for lupus, cancer and more, my B12 was tested again, and it was around 240. I believe 200 was the bottom of normal. On the Quest lab sheet, it states that low-normal levels have a...
  18. zoe.a.m.

    How many have fever regularly? Any treatment that is most suitable for those who do?

    Hey Ocean, I've never found a good allopathic explanation and I've been feverish for over the past 6 wks again. The first several years of my illness were with the same low-grade, unremitting fever - for me, it's hell. Being back in it right now has made me really aware of the symptoms though...
  19. zoe.a.m.

    What viruses to test for?

    I've been researching this lately and wondering about the cost and efficacy. If my understanding is correct, it is a med that needs to be taken continually for improvements to be maintained; is this correct? Adding another injection to my regimen sounds unattractive, but I remain interested in...
  20. zoe.a.m.

    What viruses to test for?

    Hi Ocean, I have just started looking at AVs and spoke to my doctor a couple of weeks ago about it, to which he said that he does see improvement while on AVs but, as soon as a course is stopped, the patient generally relapses. I've been dealing with a crash of epic/original-onset proportions...
  21. zoe.a.m.

    Problems with meditation

    Hi Wayne, I think I've figured out that a part, only one part of course in a myriad of factors(!), is Klonopin withdrawal symptoms. When I was in the ER yesterday for viral and bacterial infections, the issue of current meds came up and I figured out I had been tapering (about 10% over 2 months)...
  22. zoe.a.m.

    Problems with meditation

    Hi Cort, I don't know the contents of the raw herbal formula that really is the best thing I've ever used, maybe I can get some info the next time I'm in. I believe my practitioner called it the "at-war" formula and said that it is ancient, as in what people might have been treated with during...
  23. zoe.a.m.

    Problems with meditation

    edited for necessity...
  24. zoe.a.m.

    Problems with meditation

    Hi donnie, I feel like I have had some progress with my hyperacusis, and I've been trying to backtrack a little to see what has changed...? One thing I recently discovered was that a dog barking persistently was more of a problem than I had identified. I thought it was annoying, and I thought I...
  25. zoe.a.m.

    Self-pacing University

    Thanks for posting this Valentijn. Hopefully, with schooling becoming so distance oriented, more possibilities will become available, and better ones. Now it seems their "cred" isn't always the best or their costs are absurd, but I sure would like to be able to pursue further ed at some point...
  26. zoe.a.m.

    Is VEGA testing in any way useful?

    My view is that VEGA is as good as the practitioner. It's the type of thing that makes me roll my eyes, but I have had some interesting results. One thing I will say for the technology/w/an excellent practitioner, is that there are things noted (that seemed of absolutely no consequence) close to...
  27. zoe.a.m.

    Tourette like outbreak

    Massive environmental toxin spill I've heard murmurs of the conversion disorder and "hysteria" and had the same reaction as all of you. Tonight, by chance, I turned on Dr. Drew's show and it's devoted to what they're finding out about the massive environmental spill that happened there several...
  28. zoe.a.m.

    Successful Treatment of CFS - Oriental Medicine

    Tricky tricky stuff trying to self-diagnose with herbs... You can easily find 10-15 formulas that treat the same symptoms, but differ in their constituional purposes. I've taken Gui pi in the Gather Vitality tincture form, it helped a lot with night sweats and weak digestion. When I tried it...
  29. zoe.a.m.

    Housing/construction rights for the disabled?

    I haven't been able to log in here other than for a bit last night--is anyone else having this problem? (It's totally off-topic here I realize...) The information here has helped me immensely and I've found out more, and a lot more about the limitations of what is possible here in my county of...
  30. zoe.a.m.

    Housing/construction rights for the disabled?

    Thank you guys for sharing your thoughts/info. My landlords definitely fall under the category of pushy and disturbed. The other tenant (next door) of theirs just left suddenly less than 2 wks ago. The energy company people who did the audit and have tried to work with me did tell me that she's...