• 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. sarahg

    Comment by 'sarahg' in 'Dear Dad'

    Hey Spitfire- wanted to let you know that your inbox here is full!
  2. sarahg

    What about ME?- documentary

    I merged all the threads I could find about this movie into one. enjoy!
  3. sarahg

    Who Here Takes Any Kind of Mushroom?

    I would say I have had improvement in PEM and less lymph swelling/pain, maybe a decrease in fluish stuff overall. These are really the only things I can knowingly directly attribute to it. Who knows what else, really, as I have taken other things at the same time. I started taking it before I...
  4. sarahg

    Who Here Takes Any Kind of Mushroom?

    If you want to experiment with one that is cheaper, but effective-check out Myco- forte. It's about 15 $ a bottle, I've gotten it from acupuncturists, but also seen it online. Similar mix of mushrooms as the one you listed though, so it may not be right for you. I've had very good luck with it.
  5. sarahg

    A Moment of Reflection: Please Read!

    For the record, if it's a study of alternative treatments of "unexplained chronic fatigue", it's not a study of me/cfs. It will be of no use to us.
  6. sarahg

    Article: Join the Phoenix Rising team

    Also desperately needed: someone to help me organize things. I have been in a very bad crash for some time and I am the only stopgap between you and duplicate threads or threads that are in the wrong place. (have you noticed I am not doing a very good job?) The only requirement is to be slightly...
  7. sarahg

    Gulf Spill Workers Complaining of Flu- like Symptoms

    another article at http://motherjones.com/blue-marble/2010/06/chemical-regulation-gulf-workers-sickness Spill Workers Get Sick, Chemicals Get a Pass — By Emily Loftis | Wed Jun. 2, 2010 2:53 PM PDT — Deepwater Horizon Response Last week, seven oil-spill clean-up workers were hospitalized...
  8. sarahg

    About the emergence/ prevention of zoonotic diseases

    A lot of this is about H1N1 (can you tell I am cleaning through my bookmark folder?) but it had me thinking about the implications around the emergence of xmrv. from Newsweek http://www.newsweek.com/2010/04/27/animal-instincts.html Animal Instincts Animal-based diseases account for 75...
  9. sarahg

    Why Don't More Medical Discoveries Become Cures?

    From Newsweek http://www.newsweek.com/2010/05/15/desperately-seeking-cures.html Desperately Seeking Cures How the road from promising scientific breakthrough to real-world remedy has become all but a dead end. From 1996 to 1999, the U.S. food and Drug Administration approved 157 new...
  10. sarahg

    Gulf Spill Workers Complaining of Flu- like Symptoms

    Thought provoking for a number of reasons. I found it at http://www.timesleader.com/news/ap?articleID=4667757 But it is an AP article, so probably in papers across the country. Gulf spill workers complaining of flulike symptoms By NOAKI SCHWARTZ and MATTHEW BROWN (AP) For days...
  11. sarahg

    bottled vs. Filtered water. Thoughts on which contaminants worst for CFS?

    I think this all depends on what is in the water where you live, what kind of filter you have, and what kind of bottled water you are buying. You say you have a very good filter, and it is still not working out with the water you are starting with. As much as I hate bottled water, if I were in...
  12. sarahg

    Maine women publish book on Chronic Fatigue Syndrome and Fibromyalgia

    Go Maine! If I had money, I'd buy it just to support them. It seems these may be the women behind the only functioning support group in the state, though it alternates between meeting in ME and NH. All the other ones I ever looked into seemed to exist in name only, and I have heard that theirs...
  13. sarahg

    Artesunate + immunoglobin + transfer factors

    I get IMIG (though right now I am taking a break for a month or so). It's the only thing I have ever found that can bring my cognitive function nearer to what it once was. It also has reduced my viral load significantly according to test results. I have more good days and less really scary...
  14. sarahg

    Medical Marijuana for Pain and Sleep and the PEM (!) in CFS

    I understand that you may not have the energy for this, or the desire to do so. The Pennsylvania state legislature currently has bills in both houses that do not look like they will pass, the house bill is held up in committee. If you felt like contacting your state rep. and state senator with...
  15. sarahg

    bit by a tick, suggestions welcome

    Hey Rrrr thanks for that article, it was interesting. I took one ceftin, got a minor rash with the first pill and called it quits. Have to call tomorrow to get the next RX. I didn't want to jinx it by saying anything, but whatever, I haven't had any muscle twitching for like 3 days, which I...
  16. sarahg

    bit by a tick, suggestions welcome

    Yeah, the vitamin C thing is definitely weird. I almost wonder if it is more a reaction to something that a high dose of vitamin c would release (like dying viruses or bacteria, a heavy metal, etc.) and for some reason I am now reacting to whatever that is with really small doses as well. I...
  17. sarahg

    bit by a tick, suggestions welcome

    Seeker- Thanks, I am going to look into some of those things. I just gave up on LDN right before this whole tick thing happened because it seemed to be making my MCS issues go out of control. Especially interesting about the green tea. As far as the herxing, I usually just grin and bear it with...
  18. sarahg

    bit by a tick, suggestions welcome

    I forgot to mention that one thing the doctor suggested if I end up with nasty detox reactions is burbur, from the same company as the samento and cumanda. I would be very curious if anyone has experiences with this. I remain uncomfortable that I really haven't been able to find much info about...
  19. sarahg

    bit by a tick, suggestions welcome

    So I just wrote a novel of a reply and then my power went out! We shall see if I have the energy and brain to recreate it. I had an appointment with my specialist on wednesday, but it took until now for me to be able to update this. I've been a bit out of it. Maybe I will be more to the point...
  20. sarahg

    Watch CFSAC meeting online Monday 9-4 EST May 10

    The sad thing is in Klima's mind evidence based guidelines would be treatment using antivirals, sleep meds, immune modulators...things like that. But unless CFSAC themselves or maybe IACFSME is developing these guidelines, we all know that's not what's going to be in them. Another thing I...
  21. sarahg

    Watch CFSAC meeting online Monday 9-4 EST May 10

    here are some of my notes in case anyone could not/cannot access any of the video. My brain is mush so this is pretty much the way I wrote it down, apologies if any of it is unclear Dr. ? Koh- assistant secretary DHHS *wants to come to as many meetings as possible *wants to act on as many...
  22. sarahg

    Mold, Dr. Cheney and ME/CFS

    Ok bear with me, my brain is nearly gone at the moment. This is an interesting discussion. I am another who has had consistently high c4a levels. (ooh the papers are right on the desk!- last test about 2 months ago...14,000 ng/ml...reference range of 0-2830) after a bit of research and talking...
  23. sarahg

    Obama setting up a temporary insurance pool for uninsured with medical problems

    I don't think the content of this spam is the problem here. I don't think it matters what the message is, or whether or not any one person agrees or disagrees with it. The problem here is that we have a spammer who joined to make one post that has nothing to do with this forum. It has nothing to...
  24. sarahg

    bit by a tick, suggestions welcome

    Thanks so much everybody for all the kind thoughts and info, it has been really helpful. I have been doing a fair amount of research, but I'm still really indecisive about what to do next. I managed to get a (much sooner than planned) appointment with my specialist next week so we can work out...
  25. sarahg

    Deadline april 26 to effectively save the cfsac!

    HaHa...yep. That was one of several typos I found right after hitting "send". I should probably stop myself from reading things AFTER I send them. Also, all these letters are really great. Hopefully enough to prove this committee is still relevant and still sorely needed. Great job everybody!
  26. sarahg

    Deadline april 26 to effectively save the cfsac!

    rough draft...proofread me! I'm still working on it, but I'll get done in time. point out flaws, spelling errors, general ornery mood, etc. I will try to fix it. My formatting did not really stay the same, but whatever. My health has regrettably declined to the point I am unable to submit to...
  27. sarahg

    bit by a tick, suggestions welcome

    There are some of you I need to respond to and many I would like to thank, but my brain is getting burned out on CFSAC stuff. I have been looking through a lot of the resources that have been provided here and am still trying to make decisions as to what else I need to do. Its stupid, but I can...
  28. sarahg

    Deadline april 26 to effectively save the cfsac!

    This is vitally important. Put aside whatever you planned to do today and write these good people a letter. You do not need to be a US citizen to have a stake in the process. You have until 5 pm (EST, I assume) April 26, Monday, AKA tomorrow- to submit it. Tell them that we are not out of the...
  29. sarahg

    Gynecological problems - Xmrv

    I second this, big time! When I suddenly came down with CFS, the symptoms of endometriosis that I had had for over a decade became suddenly and catastrophically much worse. For me this led to a delay in diagnosis as all the doctors felt they could focus on was that, and everything else I was...
  30. sarahg

    bit by a tick, suggestions welcome

    Min- I've been meaning to get myself some coconut oil (um, I was going to put it in my hair...but I guess now I will also be eating it) Ok so for the update, doctors appointment went surprisingly well, the doctor was in a good mood and aside from our usual intellectual spar over CFS + exercise...