1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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Article: Corinne At Dr. Peterson #6 Including Picking Dr. Peterson's Brain!

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Feb 10, 2012.

  1. Phoenix Rising Team

    Phoenix Rising Team

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  2. Rooney

    Rooney

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    Congratulations on your continued improvement. We all appreciate learning about Dr. Peterson's approach and ideas.

    All the best with the Hizentra.
  3. SpecialK82

    SpecialK82 Senior Member

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    Corinne - I am inspired by your energy, not only to travel, but to document conversations and to write all about it. My brain is mush just writing this reply! I'm sure you know that many of us hang on every word.

    Thank you for allowing us access to Dr. P's brain - just priceless :thumbsup::thumbsup:
  4. frenchtulip

    frenchtulip Senior Member

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    Thank you for sharing!
  5. Corinne

    Corinne

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    Deadline to leave me questions here for Dr.P is Saturday, Mar. 3 :)
  6. Corinne

    Corinne

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    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! :)
  7. esther

    esther

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    Hi Corinne,

    I read your blog today for the first time and want to share my experience with Xifaxan with you. I was having gastro problems and was put on a treatment dose of it 3 times, always getting better in a couple of days on and worse after going off of it. So I looked up using it on a maintenance dose and discovered it is used for something on a maintenance dose. I asked my gastro doctor for the maintenance dose and was put on it. Treatment dose was 650 mg 3X day and maintenance is the same dose 2X day. I was diagnosed during this time with gastroparesis which slows emptying of the stomach and small intestine, causing rotting food to produce a build up or overgrowth of bacteria which sends toxins to the brain. I no longer feel sick after 25+ years of CFS and my energy and cognitive improvements are amazing! You might want to talk to Dr. P about a maintenance dose of xifaxan if you think it might help you. Could you please tell me what and where to get this strong probiotic you speak of? I'd much appreciate that. All the best, Esther
  8. Navid

    Navid Senior Member

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    esther:


    congrats...happy healing. so it was just a fluke that u figured this out; how extremely wonderful!!!!!
  9. Cort

    Cort Phoenix Rising Founder

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    Esther - congratulations! :hug: Isn't that something.

    I have to ask you some questions!

    Did you have really noticeable stomach problems before? What were your stomach symptoms?

    How much better do you feel? Can you exercise? How healthy do you think you are?

  10. Enid

    Enid Senior Member

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    Thanks for sharing all this Corinne and wishing you well as treatment progresses. It is good to see all the investigations required by Dr Peterson along the way (a model for the UK ?). Can't help noticing reactivating viruses (my own suspects) and hope this will be solved for you.
  11. anniekim

    anniekim Senior Member

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    Thanks Corinne for another great blog. I so appreciate you sharing your treatment journey with Dr Peterson as Enid said could this be a model for how the medical world could treat people with m.e/cfs? I hope the hizentra works well, can't wait to hear how you progress. All the very best
  12. Marco

    Marco Old blackguard

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    Holy moly Esther, that's great?

    I've also been Ill for around 25 years and the most consistent and troubling symptoms over that time has been GI problems.

    I've always felt that most if not all my problems have their origins in the gut and was on the verge of ordering some probiotic capsules to try out.

    Extensive hospital GI tests in 1990 found 'idiopathic fat malabsorbtion' followed by a discharge with no recommendations and only benign neglect from then on.

    Perhaps I should have a chat with my GP.

    Hope everything keeps improving.

    Marco
  13. Cort

    Cort Phoenix Rising Founder

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    Here's a comment from someone on the blogs regarding blood volume enhancement"

    Cheryl Warren also commented on Phoenix Rising's post.

  14. Corinne

    Corinne

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    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 prescription dose which is cheaper if yu have an insurance that will cover it and your doc will write you an order...it's double the strength.
    I also have "slow gut"..or I should say, I had it before the treatment. I am also diagnosed by DrP with malabsorption, thus the amino acid IV's which help tremendously!

    thanks, again!
  15. Corinne

    Corinne

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    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 family in Calif for the second year in a row and only the second time in 10 years. Their response to seeing me was using words such as "incredible"...with tears in their eyes....so Dr P's doing something right :D...BIG TIME!
  16. Daffodil

    Daffodil Senior Member

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    Corinne, thank you so much for asking Dr. P my question! Love your blog...

    xoxo
  17. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I have also taken xifaxin with good results and followed it with VSL-3. You can also get VSL-3 from Costco and Amazon.

    Best,
    Sushi
  18. JAH

    JAH Senior Member

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    Hi Corinne,

    thank you for your highly informative, thorough and upbeat posts. I have learned a lot.

    I have a lot of GI problems, and have never heard of the "immunobilam panel" Can you explain what it tests and what it shows? Is is a standard test? Xifaxan might be helpful for me, and will ask my doc about it.

    thanks again.

    JAH
  19. Glynis Steele

    Glynis Steele Senior Member

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    Hi Esther,

    Thanks for this. This is very like a treatment used by GI's for patients with d-lactate encephalopathy. It occurs when carbohydrates are fermented by d-lactic acid producing bacteria, the d-lactic acid crosses the BBB and causes neurological changes said to be strikingly similar to CFS. High d-lactic acid is being investigated by a team in Australia, as a possible bio-marker in CFS patients. Sometimes patients with high d-lactic levels need ongoing abx treatment, and will follow a regime such as 1 week out of 4 on abx, or 2 weeks on, 2 week off. The abx used varies, depending on the natural resistence of the bacteria present, so what works for one may not work for another. Interestingly, diminished colonic motility that allows time for nutrients in the colon to undergo bacterial fermentation may be one of the reasons for the development of D-lactate acidosis.

    The good thing, which has been noted by Esther, is that by treating the gut, the CFS symptoms have greatly improved. And long may it continue for you Esther. If anyone is interested, I can dig out the de Meirleir study on d-lactic acid and CFS, and the ongoing study in Oz. And don't forget the Increased Ventricular Lactate study on CFS patients, although obviously, it does not state which type of lactate was found to be elevated. Increased L-lactate has been noted in brain injuries, whilst d-lactate is seen in d-lactic acidosis, in short bowel patients, caused by carbs being fermented by gut bacteria.

    http://onlinelibrary.wiley.com/doi/...ionid=BF1F865FFA4EB08E8FFCC3ED44440BFD.d02t02
    CJB likes this.
  20. Corinne

    Corinne

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    my pleasure, Daffodil. Please feel free to ask another :D

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