Dona  Stobie  –  AussieLyme  Yahoo  Group  Founder  

Please  share  your  Lyme  health  story  

It  was  1999  (Gosford,  NSW).  I’ll  never  forget,  I  had  driven  to  my  local  shops,  parked  my  car  and  walked  inside.  My  vision  went  haywire,  there  were  parts  of  my  vision  that  were  missing,  patterns  of  light  and  it  was  pretty  frightening.  I  wondered  how  I  was  going  to  drive  home.  Looking  back,  I  truly  felt  like  the  Lyme  bomb  had  just  exploded.  After  that  the  symptoms  started  rolling  in  hard  and  fast.  Severe  light  sensitivity,  eyelid  twitching,  searing  and  burning,  aching  head.  These  were  symptoms  that  I  had  never  experienced  before,  they  were  so  foreign  that  it  felt  like  I  had  a  disease  from  another  planet.  I  knew  I  was  in  for  a  long-­‐term  stay  in  hell.    

Due  to  recent  stresses,  my  local  doctor  diagnosed  my  bizarre  symptoms  as  “psychosomatic”.  Without  treatment,  Lyme  disease  spread  to  my  central  nervous  system;  the  disease  became  chronic  and  intractable.  My  body  had  become  its  own  torture  chamber,  and  even  my  soul  ached.  The  pain  was  so  deep  that  I  wished  God  would  take  me,  pleading  for  the  torture  to  end.  What  stopped  me  was  that  I  was  beginning  to  see  an  echo  of  those  bizarre  symptoms  in  my  loved  ones  –  weird  symptoms,  neurological,  minor  but  present.  I  knew  that  whatever  I  had,  my  children,  husband  and  mother  had  it  too.  I  was  grieving  for  the  life  I  was  losing  and  life  I  had  already  lost.    

In  2000,  I  was  despairing  and  depressed,  contemplating  self-­‐harm.  I  called  the  hospital  to  speak  to  someone  from  infectious  disease  but  was  referred  again  to  a  mental  health  nurse  –  fate  had  thrown  me  a  rope  –  this  nurse  had  a  friend  who  had  Lyme  disease  and  she  said,  “I  think  you’ve  got  Lyme  disease.”  Those  words  saved  my  life.  The  pieces  to  my  puzzle  appeared  clearly;  the  blocks  began  to  fit  and  everything  made  sense.  I  blindly  chose  a  specialist  who  was  a  colleague  of  an  IDS  in  Australia  who  actually  acknowledged  Lyme  disease.  I  returned  positive  results  for  Lyme  disease.  I  began  treatment.  I  was  undiagnosed  for  13  months  but  over  the  years  I  have  seen  improvements,  ones  that  enable  me  to  leave  my  bed  and  home.  But  my  Lyme  remains  chronic  and  disabling.    

   

Tell  us  about  being  one  of  the  first  online  Lyme  support  groups    in  Australia  After  diagnosis,  I  immediately  got  online  and  googled  for  support  groups.  I  joined  the  American  yahoo  group  Lyme-­‐Aid.  I  made  some  American  friends.  We  would  email  each  other  every  day.  There  was  no  one  else  in  my  world  who  understood  what  I  was  going  through  and  the  first  thing  I  did  each  day  was  look  for  their  emails.  I  could  not  have  survived  without  that  support.    

 

©  Lyme  Disease  Association  of  Australia  

 

 

 

 

 

 

 

I  became  a  member  of  the  Australian  group  TAGS  which  was  an  offline,  in  person  meet-­‐up.  It  wasn’t  a  constant  source  of  support  due  to  it  not  being  easily  accessible  online.  I  felt  we  really  needed  an  online  support  group  in  Australia.  I  worried  about  those  who  were  suffering  and  isolated  with  this  disease.  One  night  I  just  couldn’t  wait  any  longer  and  on  the  spur  of  the  moment  with  a  voice  in  my  head  saying,  “Just  do  it  because  there  are  people  out  there  who  need  this!”  I  clicked  “start  my  own  group”  on  Yahoo.  I  had  some  friends  from  a  coeliac  support  group  who  helped  me  put  it  together.    

 

Are  you  surprised  that  locally  acquired  Lyme  is  still  not  recognised  in  Australia?    

Because  of  the  way  things  were  and  are  in  Australia,  the  specialist  could  not  categorically  state  I  had  Lyme  disease  for  fear  of  being  ostrasised  by  the  medical  community  who  mistakenly  believed  that  denialist  slogan  “Lyme  disease  doesn’t  exist  in  Australia”.  I  was  provided  with  continued  treatment  on  the  basis  of  a  Lyme-­‐like  illness.    

That  was  15  years  ago.  I’m  still  astonished  that  our  government  does  not  believe  that  this  disease  is  in  Australia.  Our  country  is  one  of  the  most  bug-­‐riddled  countries  in  the  world.  I  believe  it’s  crazy  to  think  that  it  does  not  exist  here.    

 

How  have  you  felt,  watching  the  increased  media  coverage  relating  to  Lyme  in  the  past  few  years?  

I  have  been  concerned  that  bringing  it  to  the  forefront  in  such  a  confronting  manner  might  make  professionals  dig  in  their  heels  and  refuse  to  believe  it’s  here.  When  I  heard  a  doctor  had  been  banned  from  treating  Lyme  disease,  it  felt  like  we  might  be  going  backwards.  I  know  people  who  were  seeing  this  doctor,  who  are  now  without  treatment  or  access  to  other  Lyme  doctors.  I  follow  their  suffering  and  it  makes  me  angry.  

I  would  like  to  see  doctors  educated  about  Lyme  disease  and  particularly  Chronic  Lyme  disease.    Just  like  there  is  the  Australian  College  of  Nutritional  and  Environmental  Medicine,  I  would  like  to  see  a  college  in  Australia  for  Lyme  disease  and  its  co-­‐infections.    

©  Lyme  Disease  Association  of  Australia  

 

 

 

 

 

 

 

What  do  you  consider  the  biggest  challenges  in  achieving  Lyme  recognition  in  Australia?  

The  governments  “ego”  problem,  not  being  able  to  admit  they’ve  made  a  mistake,  and  also  the  standard  of  our  labs  being  unable  to  properly  test  for  Lyme,  or  Lyme-­‐like  disease.  

What  advice  and/or  message  would  you  like  to  share  with  the  Lyme  community?  

Newly  diagnosed,  a  member  of  TAGS  sent  me  some  info,  she  left  a  little  note  saying,  “Hang  in  there”.  That  little  note  was  my  security  blanket,  I  kept  it  next  to  my  bed.  It  meant  a  lot  to  me.  When  I  get  the  chance  to  help  someone,  I  use  those  words.  I  would  like  people  who  have  neurological  Lyme  disease  to  realise  that  the  treatment  is  a  slow  process.  Even  though  it  takes  a  long  time,  my  advice  is  to  never  give  up.    think  is  to  aim  to  function,  to  grab  some  sort  of  life  even  if  it  is  a  small.  Aim  for  a  treatment  that  gets  you  out  of  bed  and  keeps  you  out  of  bed  and  gets  you  out  doing  something  that  is  normal  like  having  a  coffee  at  a  café.  No  matter  how  small  your  success  has  been,  grab  every  bit  of  life  and  hold  tight.  

 

©  Lyme  Disease  Association  of  Australia