• 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.

    To become a member, simply click the Register button at the top right.

Search results

  1. C

    Corinne at Dr. Peterson #7: Driving Miss (Wilted) Daisy…Chains Required! (March, 2012)

    Since I am not on Ampligen ...yet....I can't officially answer this, except that when i asked Dr.P last week if going on Ampligen meant going off anitvirals (I'm on Valtrex and IVIg), he said "Not necessarily."
  2. C

    Corinne at Dr. Peterson #7: Driving Miss (Wilted) Daisy…Chains Required! (March, 2012)

    Makes sense that the VIP normal standard is abnormally low as even though my number of 16 was considered normal by the lab, Dr P considered it low. And I just want to make it clear...it wasn't the IVIg I was hesitant to go back on, it was the SCIg (subcutaneously...not intravenous). I have...
  3. C

    Corinne at Dr. Peterson #7: Driving Miss (Wilted) Daisy…Chains Required! (March, 2012)

    regarding VIP....my result in March was 51...normal and up from the 16 he considered low. It is something I will ask him about when I see him.
  4. C

    Corinne at Dr. Peterson #7: Driving Miss (Wilted) Daisy…Chains Required! (March, 2012)

    Please feel free to leave questions or comments. It may take me awhile to respond as I will need to find someone to answer thru...don't want to compromise my soon upcoming trip back to Dr. P with head pain and dizziness. Thanks for your patience. :-)
  5. C

    Article: Corinne At Dr. Peterson #6 Including Picking Dr. Peterson's Brain!

    I am not sure about why the inflammation response would be triggered by the compputer or too much phnne talking. With the drop in BP from OI it makes sense that the body would trigger that response as a big drop in BP signals somethings very wrong. I am just assuming, from my experience, since...
  6. C

    Article: Corinne At Dr. Peterson #6 Including Picking Dr. Peterson's Brain!

    You are welcome re the blog. Thank you for your kind words. I will print out these questions and pass them along. thank you again for your interst and contributing to "Picking the doctor's brain" :-)
  7. C

    Article: Corinne At Dr. Peterson #6 Including Picking Dr. Peterson's Brain!

    Recieved my first sub Q gamma (Hizentra) yesterday. No negative affects...so far! I'm exhasusted from the orientation, etc...all the talking with the nurse, but nothing else...so wish me luck. I'll be doing it once/week and hopefully will have some results to share in the next blog :-) Feel...
  8. C

    Article: Corinne At Dr. Peterson #6 Including Picking Dr. Peterson's Brain!

    Very interesting as my friend and I who I spend countless hours over the phone both agree that it triggers "migraine -like headaches" in us afterwards...just like the computer! I will ask Dr P about this, and my assusmption is that the phone also triggers cytokine storms...maybe any...
  9. C

    Article: Corinne At Dr. Peterson #6 Including Picking Dr. Peterson's Brain!

    I love this question, Tristen..thanks! Dr P knows I take daily Aleve because of my head pain and I have asked him if I should be concerned and he hasn't said I should, so i continue. However I did think about it's affect on my gut...but I've gotta take somehthing and like you said, supplements...
  10. C

    Article: Corinne At Dr. Peterson #6 Including Picking Dr. Peterson's Brain!

    thank you Jenny. I'm doing well...and yes, I will ask him. Thanks, again! off to get a saine IV ! corinne
  11. C

    Article: Corinne At Dr. Peterson #6 Including Picking Dr. Peterson's Brain!

    Hmmmmmmm...doesn't anyone have a question they would like to ask Dr.P? Bring them on! A big thanks to all who submitted questions that I used in this blog. It was a blast asking them for you.....:Sign Thanks: Corinne
  12. C

    Article: Corinne At Dr. Peterson #6 Including Picking Dr. Peterson's Brain!

    Hi Tristan thanks for your comment. The only thing I would say to praise Xifaxan is that it's a gut antibiotic...NON-SYSTEMIC..not absorbed into the bloodstream, staying totally in the gut...unlike Cipro, etc. and knowing our tendency for side-affects, etc, that is why I like it and am not...
  13. C

    Article: Corinne At Dr. Peterson #6 Including Picking Dr. Peterson's Brain!

    The immunobilan panel is a blood test. Mine was done by Unevx, Inc in Reno (associated with Redlabs???). It is not approved by the FDA, as many of Dr P's tests note. It shows the evidence of antibodies (IgA) to bad gut bacteria such as Klebsiella pneumoniae subsp., Proteus mirabilis, Citrobacter...
  14. C

    Article: Corinne At Dr. Peterson #6 Including Picking Dr. Peterson's Brain!

    my pleasure, Daffodil. Please feel free to ask another :cheeky grin:
  15. C

    Article: Corinne At Dr. Peterson #6 Including Picking Dr. Peterson's Brain!

    Ester There is only one problem...you are advised not to take the VSL#3 while on the Xifaxan...as it is counter productive (kills all the bacteria, good and bad)...so i don't know what the answer to that would be. I do know that I have been feeling great. Just got back from a trip to see...
  16. C

    Article: Corinne At Dr. Peterson #6 Including Picking Dr. Peterson's Brain!

    great info! I honestly believe it was the Xifaxan that helped and I will pass this info on to DrP...I will use that as one of my questions :-) VSL#3 is found online at vsl3.com or call 1-866 4388753....or your pharmacy can order it for you. It's expensive but worth it. They also have a...
  17. C

    Article: Corinne At Dr. Peterson #6 Including Picking Dr. Peterson's Brain!

    It's you who inspire me!!! Thanks for the thanks! But I will say my head WAS mush while talking to the doctor...it took everything I had and it's mush now, so I'll catch you again tomorrow! :-)
  18. C

    Article: Corinne At Dr. Peterson #6 Including Picking Dr. Peterson's Brain!

    Deadline to leave me questions here for Dr.P is Saturday, Mar. 3 :-)
  19. C

    Article: Its Just the Weather, Baby! Toni Bernhardt's How to be Sick (Blog #3)

    PS...love the new photo, Cort!
  20. C

    Article: Its Just the Weather, Baby! Toni Bernhardt's How to be Sick (Blog #3)

    well said.....one word...ACCEPTANCE. does it make you happier to resist? or does it make you more miserable? My experience says, more miserable. A girlfriend of mine who has had ME/CFs for 20 years told me a gem a few years ago that I didn't get til recently..."I didn't start feeling better...
  21. C

    Article: Its Just the Weather, Baby! Toni Bernhardt's How to be Sick (Blog #3)

    PS...If one can focus on "learning and growing" as the objective (the bigger picture) , than it is posssible that one can consider every obstacle as an opportunity. I know it's not always easy, but it works:-).
  22. C

    Article: Its Just the Weather, Baby! Toni Bernhardt's How to be Sick (Blog #3)

    I'm the opposite...ME/CFS has definitely been a source of spirtual growth for me..no question. Though I was a nature lover before also, my focus was on the physical (hiking, biking, skiing, whatever) not the soul...the SPIRIT. This article is a lot about what I have been focusing on for the past...
  23. C

    Article: Corinne at Dr. Peterson #5: TARDINESS, SURPRISES, FLEXIBILITY AND ATTITUDE

    Sandy I have responded to your inquiry by private messaging...check at the top of this page where you log in and you can click on "notification"...it should say you have one unread message. If not....click on my name and it will give you the opportunity to contact me by private message. I...
  24. C

    Article: Corinne at Dr. Peterson #5: TARDINESS, SURPRISES, FLEXIBILITY AND ATTITUDE

    Sounds like we have a few things in common:winking: Seriously, I think the two are automatically connected...if you focus on the good things, like you said you do, the laughing is a natural result. How can you focus on your blessings and be depressed or miserable at the same time? It's all...
  25. C

    Article: Corinne at Dr. Peterson #5: TARDINESS, SURPRISES, FLEXIBILITY AND ATTITUDE

    Hi! and thanks for the kudos...yes, this takes energy but it is quite rewarding. Dr P is the one who sends the bloodwork to the Univ of Miami for the cytokine panel. He told us (Cort and I in May) that Klimas does the best cytokine panel. He sent it there again in Nov when i was there. Now that...
  26. C

    Article: Corinne at Dr. Peterson #5: TARDINESS, SURPRISES, FLEXIBILITY AND ATTITUDE

    It's all about faith and laughter. Even when I feel bad I try to give thanks for my many blessings and to laugh. The turning point was one of the trips I made with a friend to see DrP... I never stopped laughing the entire time...I thought I was going to die. I thought..."this is going to wear...
  27. C

    Article: Corinne at Dr. Peterson #5: TARDINESS, SURPRISES, FLEXIBILITY AND ATTITUDE

    Being "so Corinne" is a good thing...at first it came out of desperation...being bedridden and needing a plan..something...anything. But now it's based on new found confidence... You know...that "moth emerging for the cocoon" thing :cheeky grin: It feels good to feel brave and strong for the...
  28. C

    Article: Corinne at Dr. Peterson #5: TARDINESS, SURPRISES, FLEXIBILITY AND ATTITUDE

    I'm sorry, but I only give "trust points". Find someone else who hands out sympathy points....Good luck with that! ...(working vacation...yeah, right)
  29. C

    Article: Corinne at Dr. Peterson #5: TARDINESS, SURPRISES, FLEXIBILITY AND ATTITUDE

    Yes, I am allowed to give more (in fact they would love for me to) but will not do it without support...need someone there to 'caregive' for 48 hours and so far I haven't found anyone dependable enough :-(
  30. C

    Article: Corinne at Dr. Peterson #5: TARDINESS, SURPRISES, FLEXIBILITY AND ATTITUDE

    I don't know if he's looking specifically for trends but in the Simmaron Research projects coming up in the Columbia/Bond Univ studies as you are already aware, they are collecting more and more data from present patients as well as using data collected from past patients. Col. Study #2 this...