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jesslily

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jesslily

About Me

Basic Information

  • Age

    49

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My Health

  • Current health issues

    I live with early onset parkinson's disease and environmental illness
Member since
Thursday, 29 January 2015 17:26
Last online
4 years ago
  • Maff is friends with jesslily
  • Maff jesslily
    4 years ago

    Hi there, I wanted to introduce myself and welcome you to The Environmental Illness Resource. I'm Matthew (Maff) - sole Founder and Owner here and always about to offer support in any way I can. I can't imagine dealing with both Parkinson's and EI. I hope you don't mind me asking which came first and if you feel there was a connection? I myself was diagnosed with ME/CFS aged 12..then came MCS

    Maff You're welcome Jess, it's not an easy task running this site alone but one of the positives is that I get to meet a lot of lovely people like yourself - albeit mostly not under the best of circumstances!
    Thank you for sharing your story with us, I don't think we've had anyone diagnosed with PD and MCS join us before and hence it's not something I've looked into or written about so you've given me something new to consider adding to the site. From an objective point of view it's interesting that you have had heavy chemical exposures leading up to your diagnoses of both PD and MCS and have discovered you possess certain genetic mutations (I assume associated with detox, methylation cycle and CNS enzymes?). I wouldn't disagree with you at all that PD may be a form of EI given what you've experienced and shared above. I would go further and suggest links between EI and other chronic and degenerative diseases; in most cases though the EI component may go undiagnosed or even unrecognised by the patient themselves. It would be easy to envisage patients in your situation simply accepting all their symptoms were a part of living with PD.
    I too have multiple genetic mutations (mostly homozygous (++) ) in genes that code for methylation, glutathione and stress response / cognitive function (COMT). I believe my exposures came predominantly from within my own gut with a compromised gut ecology from birth that was only worsened by multiple rounds of antibiotics for recurring ENT infections as a child; the result being ME/CFS and MCS. Thankfully I've recovered from the MCS (11 years now) and the ME/CFS is manageable.
    Sorry for going on - bad habit! I hope you find some useful information here and I'll point you to anything I feel may be of interest. You might like to take a look at a blog series I wrote about Pathological Detoxifiers (just type those keywords into the search box at the very top right of the page beside the main menu).
    Oh and thank you for your kind words. I won't pretend it has been easy living with ME/CFS from such a young age but on the flip side it has given my life a fulfilling purpose and direction I would not otherwise have had or taken. We must always look for the positives...very best wishes!
    4 years ago 1

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