• 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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Search results

  1. S

    Looking for a CFS doctor in Eugene Oregon

    There is no one in this area that has a clue about much of anything. I go to the Bay Area for help.
  2. S

    Can anyone recommend ME/CFS Dr in Portland OR?

    I have seen Dr. Vosloo; he's aggressive in treatment, but I think well worth your while. He's a naturopath so don't know if your insurance will cover it. There is no one in Oregon who can help - 2 entire people I can think of- that takes insurance. Dr. Liptan is a fibro doctor, there is a...
  3. S

    Tyramine / Amine Intolerence?

    I don't get migraines but have an MAO polymorphism and boy did I develop an intolerance to amines and Tyramines. BP would skyrocket to 185/110.
  4. S

    Is it hard to convince docs to give IV saline?

    When I crashed into mast cell heck, I made multiple trips to the ER because it felt like I was having a heart attack. High blood pressure, loss of vision one time, loss of hearing a few days later with insane blood pressure readings. They refuse to treat high blood pressure, but usually gave a...
  5. S

    Janet Dafoe in hospital

    Wishing you a speedy and complete recovery!
  6. S

    Mast Cell Doctor Question

    What a relief! Thank you!
  7. S

    Mast Cell Doctor Question

    Awesome! !
  8. S

    Mast Cell Doctor Question

    Thank you @Diwi9
  9. S

    Mast Cell Doctor Question

    I understand that Dr. Chheda treats MCAS. Does anyone have experience with this doctor? I am particularly interested in knowing if Dr. Chheda is willing to work with Dr. Afrin. I really need to stay on the West Coast. Thank you!
  10. S

    Castor oil and sleep

    It is cold pressed. Another issue I have uncovered is that it is high in salicylates, so I've had to stop using it unfortunately. Thank you for your feedback @stoutejongen!
  11. S

    Need math help on T3/Reverse T3

    OK, took me awhile, but I finally saw her link to the calculator. Thank you so much for your help.
  12. S

    Need math help on T3/Reverse T3

    My recent labs show Free T3 of 3.8 pg/ml, range 2.4 to 4.2; RT3 14.4 ng/dl, range 9.0 to 27. My question is how do I convert one of them to the measurement of the other so that I can divide the FT3 by the RT3? Thanks!
  13. S

    Poll: Do you have an exaggerated startle reflex or response?

    Yes, @South, I do have big problems with these foods, they spike my blood pressure something fierce. I really appreciate this link because I have never seen information about the biological pieces driving this response. Thank you so much!! I had a horrible night's sleep thanks to unfortunate...
  14. S

    Poll: Do you have an exaggerated startle reflex or response?

    Nice, @South that clears up the bladder/histamine connection. To my knowledge I haven't ingested anything with histamine or a histamine provoking in a long time - well there was the small matter of the dental surgeon prescribing one of the worst possible drugs for pain.......I feel like I'm...
  15. S

    Poll: Do you have an exaggerated startle reflex or response?

    Lots of great information here, thank you so much @liverock!! (I am also on dopamine replacement. )....time to look at the ketogenic diet.
  16. S

    Poll: Do you have an exaggerated startle reflex or response?

    Good morning @Gingergrrl - Yes, I was on Cortef. I think I recall that I took 25 MG DHEA daily, I'm not sure what amount of pregnenolone I took - 10 mg?. I hope to bring this issue up with my naturopath next time I see her. My startle response went away with those treatments; that was in 2007...
  17. S

    Poll: Do you have an exaggerated startle reflex or response?

    I wish I would have seen this earlier. My startle response has gotten really bad this year. It was bad at the beginning of my illness and was significantly better when treated with pregnenolone and DHEA. My current dr. had me stop DHEA and pregnenolone 4 years ago. I am wondering @liverock what...
  18. S

    Castor oil and sleep

    Yes, my hair is long too. Somehow I managed to get it all out my first try this morning. Unfortunately I have to report that it did not help my sleep last night. The CFS thing of adapting to drugs so they no longer work has reared it's ugly head. I just don't understand what biological...
  19. S

    Castor oil and sleep

    I am putting it directly on my scalp, then putting on a shower cap, and a towel on my pillow. It can stain linens quite badly so we need to be careful.
  20. S

    Castor oil and sleep

    Ha-ha.....so far one oily dive gives me two nights of amazing sleep.
  21. S

    Castor oil and sleep

    So, I am trying applying castor oil to my head to try to reverse mast cell inspired hair loss and have discovered that it has helped deepen my sleep. It's messy as all get out, but i'll put up with that for sleep. I'll let you know if this side effect persists.
    • SGR
    • Thread
    • Replies: 8
    • Forum: Sleep
  22. S

    Stimulated Human Mast Cells Secrete Mitochondrial Components That Have Inflammatory Actions

    Excellent information, @Strawberry. I have a brown thumb, but maybe even I could grow something in the dark . Ten days would be a great supply. Love the scrounging reference....
  23. S

    Stimulated Human Mast Cells Secrete Mitochondrial Components That Have Inflammatory Actions

    Okay, duly noted, but what an intriguing concept. Now I'm wondering if there is any other disease that requires a six month duration of symptoms before a diagnosis can be made. Perhaps this will change with more science. Imagine if there were a vaccine against this disease. I can't think of...
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    Stimulated Human Mast Cells Secrete Mitochondrial Components That Have Inflammatory Actions

    That food list gives me hope. I can't afford to buy as much DAO as I need so these things are definitely going on my grocery list. Surely pea sprouts cost less than DAO. Thanks, @Strawberry.
  25. S

    Stimulated Human Mast Cells Secrete Mitochondrial Components That Have Inflammatory Actions

    Absolutely fascinating, @anciendaze. Very interesting about the signaling and somewhat horrifying about mitochondria being targeted by the immune system. Yes, there is so much more that needs to be done - space is not the final frontier.
  26. S

    Stimulated Human Mast Cells Secrete Mitochondrial Components That Have Inflammatory Actions

  27. S

    Professor Ron Davis's response to Naviaux study, including Q and A with Dr Naviaux

    @Strawberry, I just bumped a post from Camas, January, 2013 regarding mitochondria released by mast cells in the mast cell section, if you are interested. It's a study by Dr. Theoharides. I hope this information is not redundant to what you already know.
  28. S

    Stimulated Human Mast Cells Secrete Mitochondrial Components That Have Inflammatory Actions

    I'm thinking this explains my profound level of exhaustion - a level new to me since the beginning of this year since joining the MCAS club.
  29. S

    Professor Ron Davis's response to Naviaux study, including Q and A with Dr Naviaux

    Oh, my @rosie26, I'm sorry to hear that. Yeah, I have to confess that I use it to travel to doctor appointments, so I might be borrowing from Peter to pay Paul. Thank you for the heads up.
  30. S

    For May 12 — Life With ME/CFS for 23 Years: Casting Light on Invisible Illness

    @Jody I love the shredding our lives like a shotgun blast and the ME/CFS ghetto reference - priceless.