The power and pitfalls of omics part 2: epigenomics, transcriptomics and ME/CFS
Simon McGrath concludes his blog about the remarkable Prof George Davey Smith's smart ideas for understanding diseases, which may soon be applied to ME/CFS.
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What disorder do we REALLY have?

Discussion in 'General ME/CFS Discussion' started by joejack102, Oct 20, 2017.

  1. joejack102

    joejack102

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    For over a decade, I've been "labeled" as POTS Syndrome, Mitral Valve Prolapse Syndrome, Dysautonomia, Chronic Fatigue Syndrome, Fibromyalgia, Myalgic Encephalopathy, etc. The list goes on and on and on.......

    What is the real underlying cause? I believe every single person on this entire website has the exact same medical condition (root cause), and we are being ignored by the mainstream medical, scientific, and pharmaceutical community.

    Do we all have Mast Cell Activation Disorder (MCAD or MCAS) brought on by Lyme Disease?
     
  2. TiredBill

    TiredBill Senior Member

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    I take it you were too young to have "yuppie flu?" :D

    Bill
     
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  3. justy

    justy Donate Advocate Demonstrate

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    There are so many overlaps arent there?

    I asked my MCAS Dr this exact question what is my primary illness and will we ever know. She said we would likely never know and the best hope for now is symptom relief. The sad things is the MCAS drugs (if i can tolerate them), dont touch the M.E symptoms.

    DX with Severe M.E, EDS H, MCAS, MVP waiting on: POTS testing, autoimmune testing due to positive ANA.
     
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  4. joejack102

    joejack102

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    I also have a positive ANA test. Very interesting. I forgot to add that.

    I have to say I am very angry at the medical community that we are being neglected! This is a very real disorder, and I do not accept the fact that no professionals can tell me what exactly is wrong with me, or what's wrong with us. The FIRST step to begin to raise awareness and find a cure for anything is to have a basic understanding of the root cause. I feel as clueless today as I was in 2004. We need to all join together and change that.
     
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  5. keenly

    keenly Senior Member

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    Poor redox
     
  6. Gingergrrl

    Gingergrrl Senior Member

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    That is so interesting and my feeling is the exact opposite (that just on this website alone, we have hundreds of different medical conditions with overlapping symptoms vs. just one). This is just my opinion of course!

    I read about the root causes and triggers in people's intro threads and they are so varied. My three main triggers were a neurotoxic reaction to an antibiotic, followed by severe mono from EBV, followed by toxic mold exposure for 3 yrs in a prior rental.

    I have MCAS (we believe triggered by mold/mycotoxin exposure) but I do not have Lyme.
     
  7. pattismith

    pattismith Senior Member

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    Do you have all this? According to the docs I wisited, I am perfectly fine :D

    What is a MCAD doctor, what test are they doing to diagnose this condition, is it reliable?
     
  8. joejack102

    joejack102

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    I don't know what I have, but we all seem to be suffering from the exact same thing in my opinion. Doctors just give it different names. And nobody can tell us what's truly wrong with us and what caused it. I'm upset with the medical community that there isn't more awareness and that they cannot treat the root cause.
     
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  9. Strawberry

    Strawberry Senior Member

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    Let me guess.... Speckled pattern? That seems to be the most common for those of us with ANA.
     
  10. joejack102

    joejack102

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    ANA Titer Interp 1:80
    ANA Pattern Speckled

    Yep!
     
  11. Strawberry

    Strawberry Senior Member

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    Lol I should have bet $$ on that answer! And yet Dr Edwards is constantly saying it doesn't mean anything definitive. I can't understand why, but no longer question it.
     
  12. joejack102

    joejack102

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    See... We all have the SAME thing. And no professionals wants to help us. I feel like we only get these wacky pseudo-science people trying to get to us to try some wacky, unproven therapy all the time.
     
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  13. Wishful

    Wishful Senior Member

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    The ones trying to get us on unproven therapy while not knowing what's actually going on in our bodies seem to be doing it for their benefit (money), not ours. I have more trust in the ones trying to figure out the biochemical mechanism of the disorder. If some are doing it for the hope of personal benefit, that's okay with me. Being rewarded for results is quite proper.

    Maybe instead of contributing to a research project, we should contribute to a fund that awards researchers for making important discoveries and a big award for an effective treatment. That seems to be the way space development is going.
     
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  14. Gingergrrl

    Gingergrrl Senior Member

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    My ANA is speckled pattern, too, (1:160) and I do believe this is relevant for us in the autoimmune group but many people on here have a negative ANA for whatever it's worth?
     
  15. Strawberry

    Strawberry Senior Member

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    Except that the percentage in this forum with +ANA is pretty low. I'd expect less than 10%. But most of the +ANA are speckled pattern, for what ever the excuse.
     
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  16. Alvin2

    Alvin2 If humans were rational...

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    Its unlikely we all have the same disease because some have been diagnosed with other things (mitochondrial disorder and ALS come to mind) and we are a wastebasket diagnosis (in addition to a diagnosis without a test, a diagnosis of exclusion which can mean bad exclusions). That said there is a CFS and likely ME, but a disease mechanism for either has not yet been elucidated.
     
  17. perrier

    perrier Senior Member

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    I recently chatted with a doctor who spent his life on CFS and Lyme, and he said he doesn't think PEM is exclusive to ME. In other words, other conditions provoke it too.

    But from watching PEM closely, it seems a particular aspect of this illness. I've asked folks with other conditions,severe ones,even MS,and they don't have PEM
     
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  18. Alvin2

    Alvin2 If humans were rational...

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    Interesting. I've come to believe PEM is the disease mechanism adjusting (down) our energy level each time we over do it.
     
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  19. lnester7

    lnester7 Seven

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    Every new year I collect a new diagnosis of Autoimmune something.
     
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  20. Galixie

    Galixie

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    Not me. I don't have either of those actually.

    My ANA always comes back negative, but I've definitely got some type of immune dysfunction (high EBV antibodies but no virus detected). I wonder if the positive ANA people have an autoimmune disease and those of us with negative ANA have an autoinflammatory disease?

    I lean toward the theory of there being multiple diseases lumped in the CFS/ME category.

    Also, since there are no scientifically proven treatments yet, all of the existing approaches could be described as wacky and unproven. Testing things is how we find new things that work. At least we have a little more say in what we try than patients used to have. The breakthrough that explained why pernicious anemia patients couldn't absorb B12 came because a doctor experimented to prove that intrinsic factor exists. His experiment involved eating liver, throwing it back up, and feeding that to his patients (who did not know what they were getting). The patients were able to absorb the B12 from the regurgitated liver because the doctor's intrinsic factor was part of the mix. The experiment would be considered unethical today, but it was considered a breakthrough at the time.
     

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