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Which conditions do you identify with? (ME/CFS / POTS / Lyme / CIRS / MCAS etc)

Discussion in 'General ME/CFS Discussion' started by Jesse2233, Nov 24, 2017.

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Which conditions have you been diagnosed or do you identify with?

  1. Myalgic encephalomyelitis (ME)

    31 vote(s)
    75.6%
  2. Chronic Fatigue Syndrome (CFS)

    25 vote(s)
    61.0%
  3. Chronic Lyme Disease

    10 vote(s)
    24.4%
  4. Chronic Inflammatory Response Syndrome (CIRS)

    6 vote(s)
    14.6%
  5. Mast Cell Activation Syndrome (MCAS)

    13 vote(s)
    31.7%
  6. Postural Orthostatic Tachycardia Syndrome (POTS)

    20 vote(s)
    48.8%
  7. Fibromyalgia

    6 vote(s)
    14.6%
  8. Gulf War Syndrome (GWI)

    0 vote(s)
    0.0%
  9. PANDAS / PANS

    3 vote(s)
    7.3%
  10. Chronic Epstein Barr

    6 vote(s)
    14.6%
  11. Chronic Fatigue

    5 vote(s)
    12.2%
  12. Multiple Chemical Sensitivity (MCS)

    7 vote(s)
    17.1%
  13. Multiple Systemic Infectious Disease Syndrome (MSIDS)

    0 vote(s)
    0.0%
  14. Dysautonomia

    22 vote(s)
    53.7%
  15. Ehlers-Danlos Syndrome (EDS)

    4 vote(s)
    9.8%
Multiple votes are allowed.
  1. Jesse2233

    Jesse2233 Senior Member

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    Edit: Have simplified this first post to help get more data on the poll...

    Which conditions do you identify with or have been diagnosed with? Feel free to post any additional conditions not listed
     
    Last edited: Nov 24, 2017
  2. Jesse2233

    Jesse2233 Senior Member

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    Edit: including some of my initial thoughts previously on the first post here...

    ME/CFS, POTS, Chronic Lyme, CEBV, MSIDS, CIRS, MCAS, PANDAS/PANS, Fibromyalgia, GWI, and MCS comprise a constellation of conditions all involving nonspecific immune dysfunction often following some sort of traumatic trigger.

    Many of their symptoms overlap and patients frequently carry multiple diagnoses. Due to the lack of reliable biomarkers for most of these conditions, a person's diagnosis can end up being a product of chance, specialist proximity, and the keywords they type initially type into Google (and specialists they subsequently seek).

    In my case because I live close to Dr John Chia, I was diagnosed with a Chronic Enterovirus. I'd probably have a diagnosis of seronegative Chronic Lyme if I'd seen Dr Richard Horowitz, or just POTS if I'd stopped at my cardiologist.

    Are these merely shades of the same immune dysfunction? Are they completely discrete diseases? Is the truth somewhere in between with overlap and misdiagnosis occurring frequently?

    Some food for thought...
    • Dr Robert Naviaux demonstrated a metabolic pattern for ME/CFS that is distinct from Chronic Lyme.

    • Another study recently showed different brain imaging in GWI and ME/CFS (also borne out by Dr Nancy Klimas' differential immune profiling).

    • To complicate matters there's Fukuda and Canadian Consensus diagnostic guidelines that allow for much heterogeneity within ME/CFS.

    • From reading patient forums there are clearly ME/CFS subsets that are profoundly different from each other, and may have more in common with a given subset from another constellation condition.
    • There's also the thorny debate over ME vs CFS vs Chronic Fatigue as distinct entities
    • There's Dr Naviaux's contention that all chronic diseases are governed by a stuck cell danger response
    • And there's also the philosophical question of how you define a discrete disease, and where you draw the line in the age of personalized medicine / genetics.
    Because most of these conditions have poor funding, conflicting studies, and few approved treatments, anecdotal patient experiences are often key in planning a treatment protocol.

    Certain conditions are more closely associated with specific treatments, yet it seems that there are examples of all conditions benefiting from a given treatment used in this constellation (e.g. a Lyme patient benefiting from Valcyte, or a POTS patient benefiting from Doxycycline).

    As a practical matter even if one carries an ME/CFS diagnosis it's often useful to look at treatments for one of these other conditions when putting together a holistic treatment plan.
     
    Mel9 and Sancar like this.
  3. Gingergrrl

    Gingergrrl Senior Member

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    Hi Jesse, I don't know what to call it but another category for your poll might be autoimmunity or autoantibody driven symptoms?
     
    Jesse2233 likes this.
  4. alex3619

    alex3619 Senior Member

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    Logan, Queensland, Australia
    This would get my vote.
     
  5. Jesse2233

    Jesse2233 Senior Member

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    Ah that would've been good! I can't go back and edit it now bc people have already started voting.

    But yea something like "Nonspecific Autoantibody Driven Symptoms"
     
    pibee and Gingergrrl like this.
  6. ljimbo423

    ljimbo423 Senior Member

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    813
    United States, New Hampshire
    Hey Jesse, good thought provoking questions!

    It seems clear that immune system dysfunction is at the root of most of these problems. The next obvious question is "what is causing the immune system dysfunction"? I personally feel that to a large extent it is caused by immune system dysfunction from a leaky gut.

    However, the immune dysfunction effects each individual differently. Depending on their genetics, epigenetics, diet, lifestyle, previous infections, stressors, microbiome makeup, etc. Chris Armstrong talks about how slow sepsis (leaky gut), over months or years.

    Depletes the body of metabolic substrates and co-factors leading to a low energy state, hypometabolism and CFS. He also says that because of these low metabolic substrates and co-factors. That we can't just add these back in 1 or 2 at a time. They all need to be brought up together or re-feeding syndrome occurs, worsening symptoms.

    As you say though Jesse, one can go to ten different cfs doctors and get ten different diagnosis's. Which makes it very difficult to find a common thread that could be the root cause of many or most cases of cfs.

    Jim
     
    echobravo, Gingergrrl and Jesse2233 like this.
  7. pibee

    pibee Senior Member

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    165
    [Autoimmune] encephalitis is missing in this poll, imo.


    My vote :
    1.Chronic Lyme, then..ME, AE, PANS.

    I am tempted to say cirs too but my high MSH confused me, although VIP is low etc.

    i still identify way more with Chronic Lyme than ME, because definition of Chr Lyme covers it all anyway...pans,me, autoimmune encephalitis.. it's all included..

    and also because at least half, if not more, of my symptoms ae not ME or if they fit ME its fom CCC which is extemely broad and basically seems like any neuopsychiatic symptom fit in CCC. When i look at forums, i think my symptoms ae much broade than those of a typical , avg, ME patient.
     
    Isaiah 58:11 and Jesse2233 like this.
  8. Jesse2233

    Jesse2233 Senior Member

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    Thanks @pibee you’re right AE would’ve been a good addition
     
  9. Gingergrrl

    Gingergrrl Senior Member

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    I wish there was a name for this (in real life!) b/c all of my current doctors feel there are auto-antibodies that are causing illnesses that do not yet have an official name by current science. But I have no idea what the name would be?!

    I would think this would be an example of an autoantibody driven syndrome, except that it has a specific name, and would be in the same category as above?
     
    Jesse2233 likes this.
  10. Jesse2233

    Jesse2233 Senior Member

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    I vote GINGRLS (General Immunologic Neuroendocrine Gamma-globulin Responsive Lyme-negative Syndrome)
     
    Wishful, pibee and Gingergrrl like this.
  11. Gingergrrl

    Gingergrrl Senior Member

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    Wow, that is very creative ;)
     
    Jesse2233 likes this.

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