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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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Search results

  1. A

    Feel better on Prednisone?

    if i find the cortef to remain helpful at the dose i'm on then so be it if it's for the rest of my life. i'm at the point where being that fatigued is wearing my spirit down and i know that's worse for me. i hope you all feel better whatever your decision is.
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    Feel better on Prednisone?

    i've been on 20 mgs of cortef for several months now and it's been very helpful.it's worth reading dr jeffries and low dose cortef regarding the benefits.google dr jeffries and cortef and see what he has to say. this was his lifes work. best a.
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    New problem: Vertigo

    i also have had this vertigo for the last 2 days and haven't experienced it before so it's great to read it will go away at some point.i haven't been doing anything different so i wasn't sure what to do..time seems to be the answer. feel better nielk.
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    Rituximab or Methotrexate (Mtx) for CFS/ME

    i agree no doc is going to prescibe this unless you're in a study and where an oncologist is apart of the trial. i was just curious if that info was out there regarding amounts taken etc.
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    Rituximab or Methotrexate (Mtx) for CFS/ME

    i believe dr enlander will be starting a study. the rituximub wipes out the b cells(lymphoma) and also where the ebv cells are as. i live in canada where rituximub is available...but trying to get a doc who will do the paper work to get it and infuse is impossible. does anyone know how much...
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    Antiretroviral Trial

    i'm curious to know if anyone has had the dopler ultra sound on the jugular veins.there could be blockage just like ms.
  7. A

    Successfull GcMAF Therapy

    eikmar what fantastic news.congratulations on all your hard work and it paying off.this is very exciting. janey thankyou for the translation.
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    Antiretroviral Trial

    hi daffodil, how many infusions are you suppose to have?? and did ths ny doc give you a time frame as to when you may start to feel a change? xo
  9. A

    Glutathione IV push?

    good to know..thanks for posting the info. what kind of doc administers it?
  10. A

    Antiretroviral Trial

    hi daffodil, i know pain meds have been mentioned so i was wondering if you've tried them for a bit of relief. big hug.
  11. A

    Adrenal Issues and treatment problems

    caledonia i agree with trying a schedule on the seriphos..don't wait until you're anxious it becomes such a vicious cycle.good luck! i've lowered all my hormones and will take the dhea several times a week only. i've added natural adrenal support with the cortef and my energy is still the best...
  12. A

    interesting link about hormones and neurotransmitters

    mine are in individual pots.they were too strong after a few weeks so i was able to figure out which ones to take less of. and so far very good.best of luck. ukxmrv just a suggestion..working on your adrenals will help up your cortisol.worth a shot if you haven't already.
  13. A

    Depth perception?

    i always thought it was inflamation..don't really know though. on bad days i feel like i'm miles from everything.
  14. A

    interesting link about hormones and neurotransmitters

    heapsreal i've noticed that my other meds seem to work better since taking these new meds. my sleep has definitely become deeper. good luck with your new trail.
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    Depth perception?

    it was one of my first symptoms.everything seems far away.
  16. A

    interesting link about hormones and neurotransmitters

    thanks for posting this heapsreal.this is exactly what one of my docs has been doing for me.low or high cortisol can be damaging. i mentioned in another thread that i was almost flatline with my adrenals,very low cortisol,low dhea and no hormones.i'm on a low does of cortef(the research i did...
  17. A

    Hair loss

    low cortisol means lower hormone levels.i'm post meno(12 years) and my hair started to fall out 8 months ago. I'm on a low dose of hormones plus low cortef to help a variety of problems.hair loss being one.
  18. A

    Low dose Naltrexone

    i had to go off the ldn.i was finding myself shakey at 1/4 of 1 mg so i knew something was up.just got my results from a saliva test and blood work..i'm flatline on adrenals,dhea,cortisol and hormones..so.i stated taking some meds for these issues but when i feel my adrenals are in better shape...
  19. A

    Adrenal Issues and treatment problems

    Spitfire i'm sorry to read you're still feeling awful. i had a big surgery 2 years ago and after i wasn't picking up at all.in the new year i developed such extreme allergies my eyes were always watery and hurt like hell.after several allergist(that took months)i find that my allergies are...
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    Antiretroviral Trial

    daffodil i also think it's worth doing the ala and getting a good pain killer would give you some relief which you need. great advice guys!
  21. A

    really good video from lawyer who has sued the FDA

    Thanks for posting.It's amazing what we don't know.
  22. A

    Low dose Naltrexone

    I've had really good half days on the ldn even at such a low dose.However when it wears off I'm experiencing what some of you have mentioned in that I become more sleepy.It's not that I'm feeling the usual fatigue it's more of a sleepy feeling.Have any of you who've had this reaction felt less...
  23. A

    BOOK: The burden of CFS in Canada

    That first link is dead on about not enough care for CFS/ME/EBV in Canada.I have to tell my family doc what to prescribe as he hasn't a clue.Whatever Doc Klimas suggest he'll do thankfully.But we have no labs that will do any extensive blood work and most of our doctors aren't interested because...
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    Suffering and spirituality 2

    Ember thanks for posting that.Humour is another big one on my list!
  25. A

    End of the Line

    You have an amazing spirit jimells!
  26. A

    Artists, Creative people

    It's really lovely.I wonder if you could link it here. I love your friend's voice who accompanies you..you're good together. Don't change the title it works. Worth listening to everyone.
  27. A

    Antiretroviral Trial

    What will cross the brain barrier is ALA..alpha lapoic acid.It helps remove metals from the brain plus it's very good for the liver. It's worth a shot Daffodil.It may give you some relief. Also if you want to remove chemicals from your body if you're feeling too toxic take activated...
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    Low dose Naltrexone

    That's fantastic.I'd like to get there.
  29. A

    Low dose Naltrexone

    Sushi were you always able to sleep with your night dose?