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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. jackie

    Morning has broken

    mark...ive read your powerful statements about pain before...and i dont think your words could be improved...they tell our story perfectly. each morning when i wake up, i am both elated...and horrified....to find that i am still alive.
  2. jackie

    Comment by 'jackie' in 'Crows Trilogy ( three poems about ME/CFS)'

    you are a treasure! i just found your sea trails (which im getting!)...and also listened to song of the wadi hitan, night moon etc. wonderful! again, thanks (btw...i found a sculptress last year who works in a very tiny scale....she had a trio of lovely crows (complete with a nest and speckled...
  3. jackie

    Comment by 'jackie' in 'Crows Trilogy ( three poems about ME/CFS)'

    pris, these poems are achingly beautiful! they pull me in...and compel me to read them - over and over. thank you, jackie
  4. jackie

    CDC's Updated CDC/CFS Website: 21 July 2010 - CYA Plan for their desperate cover-up!

    actually...i was thinking of anderson coopers 360 and the cdc debacle just the other day...................................................?
  5. jackie

    Reeves questionnaires in clinical settings - CDC marketing them

    Yep. Exactly dr. Y! you cant move an immovable object like the cdc...we have to move what moves (and controls) that object....very high up....and the time really must be NOW - or this re-vamp will be set in stone (as has everything else they have done for 30 years). to tell the truth, this...
  6. jackie

    July 26-27, 2010: Blood Products Advisory Committee Meeting- XMRV - INFO ON THIS????

    the info i was sent, it that NORMALLY the cost of the webcast is $140......but that todays meeting is NOT being webcast live. No word yet on whether tomorrows meeting will be webcast. (my info came from xmrv gobal action) peresonally...id like to know why (i mean, why NOT?) j
  7. jackie

    Immune Factor Rituximab on Immune Function in ME/CFS

    i hope its ok to write about an adverse reaction to rituximab. if this bothers anyone i will quickly remove it (someone just tell me!)...as i'm not against this particular drug and its potential benefits..but will be extra cautious especially with pre-screening, if im offered the opportunity to...
  8. jackie

    How long?

    well said...sickofcfs! (also, you reminded me of the fact that in the early days of aids....acyclovir was widely used - and its still being used to suppress cmv, vzv for example, as well as other viral reactivations in hiv...and i dont know why it isnt being used more often as an alternative to...
  9. jackie

    How long?

    Cort...I really didnt experience any improvement for the first 1.5 years (during this time period I started at 800mg. and did a gradual titration up to my current 3200mg. per day). I never stoppped and started or lowered my dosage (no drug "vacations"). Never added in any other "treatment"...
  10. jackie

    How long?

    this is exactly why i take long term high dose antivirals (4 yrs)....and because a good portion of my memory and cogntive problems have lifted. two years ago i wouldnt have been able to read or write here. (this was my most worrisome symptom...i can live with the symptoms of chronic viruses...
  11. jackie

    Dr. Chia Produces New Form of Oxymatrine

    Hi Binky123! (just saw your post) good luck with the equilibrant!....i will also begin very soon (after putting it off/procrastinating for several years!). In order for my dosage of acyclovir (3200mgs) to be eventually titrated down to a more manageable amount (say, 800mg) i must attempt to...
  12. jackie

    Antiretroviral Trial

    thanks sue! I'll be very interested when you have a chance to compare some of these new labs with the previous results....i think this might be an important link for you. (i hope so!) also...your comment about increasing dosage and feeling better for about 4 days (and crashing and...
  13. jackie

    Antiretroviral Trial

    sue...can you share what labs you had done recently (what you are wating for results on?)...also, cant remember if you already said....have you tested positive or are your numbers above normal for hhv-6?) thanks, j
  14. jackie

    VIP Dx MAJOR ANNOUNCEMENT on Jun 1 !

    thank you Rrrr! (re costs) jackie
  15. jackie

    VIP Dx MAJOR ANNOUNCEMENT on Jun 1 !

    dorothy...anybody! the cost, please!? (thread moving too fast for me to keep up, so if someone already said..sorry!) thanks, jackie
  16. jackie

    VIP Dx MAJOR ANNOUNCEMENT on Jun 1 !

    Do you have any idea how much you've been missed, Georgie? Even The Poms missed you.....and you're really not their "type"...but still!
  17. jackie

    Heart Hurt

    oipemowell, me too...i dont even feel well enough to write all the things id like...to let you know youre not alone...but i cant even do that small thing for you. know that i feel what you feel right now. one more...feeling as you do. that makes two of us. in fact...i FEEL just as your...
  18. jackie

    Dr. Chia Produces New Form of Oxymatrine

    Hi cloud...what is your dosage? (oxy not "equilibrant", right?) in the "old days" (or "first days", i should say) you generally started very slow...you would feel an incease in symptoms (what WAS a problem BEFORE became a bigger problem!)...you waited (staying on that dosage)...and in a period...
  19. jackie

    Antiretroviral Trial

    gu3vara...while i was looking into Polymaviruses, for example (the two which cause disease in Humans) I saw that (from Brain biopsy data) patients with PML - IRIS demonstrated MASSIVE inflammation - with infiltration by Machrophages and cd8 Lyphocytes (as opposed to "classical" PML - where...
  20. jackie

    Antiretroviral Trial

    hi natasa!...my LIMITED understanding of IRIS...is that it represents a restored ability to mount an "inflammatory response" - and this response does not necessarily signal a reactivation or worsening of symptoms of the "primary disease" (mistaken for a true disease progression) but rather a...
  21. jackie

    Antiretroviral Trial

    i would indeed be suspicious of iris if you have had a "spike" in cd4 count..preceeded by a low cd4. corticosteroids and acyclovir are sometimes used to keep any cmv, any opportunistic infections etc. and ESPECIALLY VZV reactivation (as this can impact the brain as well as the heart), and...
  22. jackie

    Comment by 'jackie' in 'The Set Up'

    very powerful story, holly! my jaw dropped to hear your words...isnt it amazing how many of us insticnctively KNOW our own story...even though its just NOW, at this point in the history of this disease, that doctors are catching up to our speed! Dr chia is zeroing in on the very aspects you talk...
  23. jackie

    Comment by 'jackie' in 'Chaos, dissension, control issues and cruelty'

    Some people feel that they were treated in a heavy handed manner, during and after, that quite contentious thread. (in fact I think that cort agreed that this happened) A genuine apology by a member was thrown back at her with the words " a sweet apology followed by a slap!" .and this left a bad...
  24. jackie

    Learning CFS: the Lerner Antiviral Treatment Trial Succeeds

    wanted to chime in Lisa...with my own experience. My most noticeable improvements are in the area of cognitive/memory etc., and yet i still experience PEM (and depending on the triggers...very SEVERE pem!) BUT...it lasts for a MUCH shorter period of time, and is MUCH less severe...
  25. jackie

    Learning CFS: the Lerner Antiviral Treatment Trial Succeeds

    thanks Anncavan! for the dosage info. In nearly 4 years I've only stopped for several days one time - and im taking acyclovir instead (and although it generally takes 2-3 weeks before feeling the full effects of "stopping")...i began to feel the effects big time in just those few day! (i had...
  26. jackie

    Comment by 'jackie' in 'The Patient Advocate Covers the Invest in ME Conference'

    Excellent report, chris! Thank you so much. I've been "pacing" around like a mother hen....waiting to hear good reports about Dr. Chia and what he brought to "the table". Sounds like once again...he didn't disappoint! (as you say...when he talks - you pay attention!) jackie
  27. jackie

    Learning CFS: the Lerner Antiviral Treatment Trial Succeeds

    so if one has Varicella Zoster Virus with fluid-filled blisters/vesicles) and the fluid is tested (and found to be positive for vzv...and by clinical exam)...is THAT considered to be an "active" virus? (I'm assuming that this would be called active?...regardless of any other viruses that person...
  28. jackie

    Learning CFS: the Lerner Antiviral Treatment Trial Succeeds

    anyone want to "translate" deans data for me? (sorry, severe PEM at work!) i hate to "drop out" this far into the thread, but the info is a blur of words...thanks, j (cant even figure which emotie to use!...is there a "I sincerely want to understand what everybody is talking about today!" one? )
  29. jackie

    My AZT + RAL Trial

    cant read through whole thread...but if you're continuing with AZT/RAL good idea to check the basics - cd4&cd8 at intervals (watch for iris/help to gauge progress, imo...maybe you already are?...cant remember) wish more docs would do this (watching for that window of time where iris might take...