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

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Dec 6, 2011.

  1. Phoenix Rising Team

    Phoenix Rising Team

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  2. Enid

    Enid Senior Member

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    Much enjoy the "attitude" Cort - it's where we are at. All on the way now.
  3. ukme

    ukme Senior Member

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    Thank you for sharing that Corinne, maybe one day I'll get my starfish over to see Dr P too. All the best with everything.
  4. Corinne

    Corinne

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    Just FYI... those of you who submitted questions for me to ask the doctor in the comment section at the end of my last (blog #4, May), I want yo to know that they were asked at my visit in Nov and will appear in that blog which will be following this one. Yes...they got answered !!! :DWhen that blog is posted I will be asking for more questions from you so I can bring them in March. Thanks for your participation!
  5. floydguy

    floydguy Senior Member

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    Hi Corinne,

    Thanks so much for taking the time to report these visits to Dr. P. I was curious about the Procrit injections. Why are you taking Procrit? Most docs won't touch Procrit with the exception of Ritchie Shoemaker. Is there a particular issue that the Procrit is addressing or does it just make you feel better?


    Thanks,
    Andrew
  6. Corinne

    Corinne

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    Procrit in itself will not make you feel better, however when asked about treatments for low blood volume and orthostatic intolerance, Dr P said he found that Procrit (which increases red blood cells) IN CONJUNCTION (that is the key) with saline infusions as the best way to treat it.
  7. anniekim

    anniekim Senior Member

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    Corinne, I so appreciate you sharing all of this.....
  8. rlc

    rlc Senior Member

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    Hi Corinne, thanks for sharing, I was wondering, I noticed in your previous article that you said you had low Vitamin D despite taking 1000 iu for two years. Dont know if youve read about it, but there is a lot of new research, that maybe Dr P isnt aware of, that shows that vitamin D deficiency needs to be treated with far more than 1000 iu a day, and that the reference ranges being used in laboratories are far lower than they should be, theres a good article about it here, http://www.thorne.com/altmedrev/.fulltext/13/1/6.pdf

    They have also found that without adequate vitamin D levels the bodys immune system is unable to fight any infections properly, see http://www.sciencedaily.com/releases/2010/03/100307215534.htm

    If your Vitamin D levels dont go up with treatment the most likely cause is a magnesium deficiency see http://www.vitamindcouncil.org/news-archive/2009/magnesium-and-vitamin-ds-co-factors/ if you get symptoms from taking more Vit D like the ones mentioned in this article the cause is normally a magnesium deficiency http://www.vitamindcouncil.org/about-vitamin-d/vitamin-d-cofactors/magnesium/

    Maybe if you can get your vitamin D levels up to the correct levels, it may relieve some of your symptoms, because vitamin D deficiency causes chronic fatigue and serious muscle pains, immune dysfunction etc, bad enough having to deal with ME without having to deal with vitamin D deficiency symptoms as well, maybe you could talk to Dr P about it and see if he is interested in the new research.

    Hope this helps,

    All the best
  9. Corinne

    Corinne

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    Thanks! it wasn't Dr P who had prescribed the Vit D...it was another doctor a year before I ever saw Dr P. I agree about needing more than 1000 iu...I have been taking 2000 iu this last few months and probably could use more. I'm also taking some liquid cal/mag. I want to see if it has changed at all with this last testing. I'm always just borderline low...around 30 or so.
  10. Cort

    Cort Phoenix Rising Founder

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    The 'organized chaos' - I was just talking to someone whose doctor would love to get a couple of graduate students to download her records onto a database and then analyze them for subsets. I think Dr. Bateman had this idea as well. I know Dr. P has a grad asst helping build up a database using some of his patients. Do you know if he's engaged in a larger study - looking for trends in all his patients over time? Just think of all the information our ME/CFS specialists have - decades of data full of lab tests........and treatment results..
  11. Cort

    Cort Phoenix Rising Founder

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    Those IV's and Procrit obviously make a difference for you. Getting an IV in the midst of an exhausting trip really helps - good evidence that low blood volume plays a role:). Do you ever test for blood volume at Dr. P's and if so what has it revealed?
  12. rlc

    rlc Senior Member

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    Hi Corinne lets hope your vit D levels have gone up, just to give you some idea of what kind of treatment is needed sometimes, I finally got a doctor who had a clue what they were doing and was prepared to read new information, they put me on 50,000 iu every week, for 12 weeks, and I still take 5000 iu a day when the sun isnt shinning, it has made an enormous, difference to my symptoms, fatigue greatly reduced, heart pain and palpitations gone, , can think a lot clearer, sleep better, muscle pain and twitching greatly reduced, asthma gone and havent had any colds or flue since, POTs symptoms have also gone.

    I took large doses of magnesium and the same time, but until my magnesium levels had increased enough every time I took the big tablets of vit d, my heart pain etc got a bit worse for a couple of days, so I obviously needed the Mag as well. Taking larger doses of vit D needs to be done with a doctors supervision and as your on so many other medications there may be a risk of interactions, But if you can get Dr P or someone else to supervise treatment, in my experience getting Vit D levels up to the new recommended levels makes a massive difference. It seems to be something that a lot of Doctors have never really thought about, but if people get an illness that forces them to be inside a lot and not get much sun, their bound to get Vitamin D deficiency very quickly, which will only make things worse.

    All the best
  13. Corinne

    Corinne

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    I tested for LBV prior to seeing him. It was one of the tests I hoped would get me to be his patient. I had a pretty flexible physician who knew nothing about ME/CFS but was willing to do non-invasive stuff if I used enough influence to sway him (and I became good at that :)...and if it wasn't too expensive. I talked him into prescribing the Chromium 51 Blood Volume test (it's a nuclear med test) that could only be done at the hospital. A very easy test to do and Medicare covers most of it. It showed the typical low red blood cell volume...but they called it "anemia" because they didn't know what else to call it. I suppose it perplexed them...because according to "normal" if you're not bleeding somewhere you shouldn't have LBV right? I sent it in with my second try applying to DrP and that's when they called me back in a week to schedule an appt :)
  14. Corinne

    Corinne

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    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 spring will focus on collecting bodily fluids such as saliva, urine, tears, etc (of which I hope to participate) and which will be run thru the Lipkin array looking for "known and novel pathogens" whereas, if I am correct, Col #3 will collect spinal fluid of which he will also use the CSF he already has frozen (mine included) from past patients. They will be looking for NK cell function and also performing a cytokine array on those. My guess is this data will give them a good comparison of "trends" of patients present and past....as well as a ton of new info they will acquire with the new and better testing now available...however that will be a good question for me to ask him at my next visit. Thanks!:)
  15. Cort

    Cort Phoenix Rising Founder

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    I just love it - that's so Corinne "I talked him prescribing the Chromium 51 Blood Volume test". I'll bet your blood volume is doing better - you look a bit more 'filled out'..:D
  16. Cort

    Cort Phoenix Rising Founder

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    Good - wouldn't want the 'Queen of Questions' to run out of them. I guess they haven't started taking samples for the Lipkin pathogen study? That will be in spring?

    Will you be allowed to contribute more spinal fluid to this vital study? :D:D:D
  17. Cort

    Cort Phoenix Rising Founder

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    And about this Cort guy sipping margaritas in Mexico. Yes, it was beautiful San Miguel de Allende but could it be that this was actually a 'working vacation'? Maybe he should get some sympathy points for the Montezuma's revenge he suffered as well? :D:D:D
  18. Corinne

    Corinne

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    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 :-(
  19. Corinne

    Corinne

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    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)
  20. Corinne

    Corinne

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    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 :D It feels good to feel brave and strong for the first time in 20+ years...that's what DrP and my FFL have given me:D
    Yes, I've gained 7-8 pounds in the last year...it's noticeable. Something I haven't been able to do for 20 years.

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