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Mark Berry, Acting CEO of Phoenix Rising, presents the Board of Directors’ open letter to Queen Mary University of London (QMUL) urging them to release the PACE trial data, and hopes that other non-UK organisations will join British charities in the same request...
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Is this a 'waste basket' diagnosis?

Discussion in 'Connective Tissue Disorders/Ehlers-Danlos Syndrome' started by drob31, Apr 2, 2015.

  1. drob31

    drob31 Senior Member

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    So, I met with the head of Rheumatology at Hopkins today, Dr. Michele Petri. I started with her intern who seemed a little open minded and was clearly working through possibilities he recently learned in medical school. While they set me up with specific blood work and labs to look for a very narrow condition, I was unimpressed with some of the recommendations.

    Fish oil is bad, and so is melatonin. However, flu shots and plaquenil are good. I may be taking this out of context, but that's literally what was implied. The rationale for this was that Fish Oils raise bad cholesterol, and melatonin has a bad effect on people with lupus.

    Based on my symptoms and history, they could not classify me as having an autoimmune condition. However, they gave me the label of undifferentiated connective tissue disease. If you draw a VENN diagram with circles representing autoimmune conditions like lupus and APA, and like draw a circle that overlaps them, that's what I supposedly have. It basically represents the unknown.
     
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  2. halcyon

    halcyon Senior Member

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    Did they not think much of your recent autoimmune blood panel results?
     
  3. drob31

    drob31 Senior Member

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    They don't know much about Cyrexlabs, so they pretty much discarded the results.
     
  4. Gondwanaland

    Gondwanaland Senior Member

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    I think the Cyrexlabs tests are a tool from and to integrative pratictioners. I don't think at Hopkins they practice integrative medicine...
     
  5. drob31

    drob31 Senior Member

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    They may be more progressive, but I think it's hard to lump them as strictly integrative.

    In any case, which one uses real science? That's the side I want to go with....
     
  6. Gondwanaland

    Gondwanaland Senior Member

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    That is a really relative concept nowadays :wide-eyed:
     
  7. drob31

    drob31 Senior Member

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    Sorry, I mean only if it's big pharma approved. :whistle:
     
  8. Gondwanaland

    Gondwanaland Senior Member

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    I assume you are aware of the "solid" science behind the best selling meds like statins and anti-depressants.
     
  9. alex3619

    alex3619 Senior Member

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    Logan, Queensland, Australia
    Fish oils raise HDL, not LDL. It is also the case that cholesterol research is in an upheaval. I am unsure how much of the old dogma is still correct.
     
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  10. drob31

    drob31 Senior Member

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    $olid, yes, of course.
     
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  11. drob31

    drob31 Senior Member

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    That's what I had thought. It raised HDL. This person was all about pharmaceuticals. It was kind of scary.

    I have a paper that says remember to get your Flu vaccines every year, your pnemonia vaccine every 5 years, and your tetanus vaccine every 10 years. That could be 3 vaccines in one year. Seriously? And avoid fish oil?

    wth...
     
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  12. Jonathan Edwards

    Jonathan Edwards Senior Member

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    For what it's worth amongst doctors who have a reputation for keeping people with lupus alive, Michele Petri comes pretty close to the top. This is a seriously intelligent and erudite clinician. I doubt pharmaceutical companies come in to the equation. No company makes any money out of lupus. It is too rare. The limited account you give of the suggestions made sounds reasonable to me. Fish oils may help inflammation a bit but the real long term problem in lupus like illness is cardiovascular disease. I don't know the recent evidence on cholesterol but Petri will. It looks like they have reason to think you have a positive ANA? And maybe some other blood findings to conclude that this is undifferentiated CTD? Maybe some signs in the hands or muscle changes? UCTD is not the unknown. Clinicians who run lupus clinics have extensive experience with this diagnostic group and each patient will be managed according to their particular features. Detailed subtyping of ANA can be very helpful too. In fact there is probably more variation within lupus than there is within UCTD. If that is what you have you are unlikely to find a more expert clinician than this one.
     
  13. drob31

    drob31 Senior Member

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    Thanks for your insight, Dr E. I wasn't trying to put anyone down, I know they are experts, I'm just having an issue consolidating conventional medicine with functional medicine. I think there is allot to diet, exersize, and supplementation, and I'm not sure I trust vaccines either, but I can see where you're coming from with fish oil depending since it depends on the context.
     

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