Hi there my fibro friends :) some good news and hope at last of change.........

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carolynvb
Veteran Member


Date Joined Oct 2006
Total Posts : 540
   Posted 9/29/2008 7:42 AM (GMT -7)   
Hey guys,
 
Just wanted to share this with you.  Huge for the lyme community and I am excited as I think that DRs will eventually have to take a long hard educated look at all conditions.  I know that the outcome of having lyme many times ends up with fibro for us and therefore it gives me hope that all round things will change for the better,
 
Love and hugs,
 
Carolyn
 
 
 
 
 
 

Jeannie143
Veteran Member


Date Joined Apr 2004
Total Posts : 6056
   Posted 9/29/2008 8:56 AM (GMT -7)   
Carolyn,
There is some suspicion in the medical community that the underlying causes of Lyme, Fibro, MS, Crohns and other conditions running rampant across our country are related in some way. Hopefully there will be progress if they can get congress to act on research grants... But with the current economic problems I don't see them jumping on this. And I think I know why... EVERYBODY worked on a cure for polio because it KILLED lots of people, especially children. Cancer & Aids get big press because they kill people.

Lyme, Fibro, Crohns, MS and other autoimmune conditions take a looooonnngggg time to contribute to death, and in the mean time just make people's lives miserable. The conditions that afflict us aren't obvious to the casual onlooker and unless someone you know has one of these diseases or disorders most people don't pay attention to them at all. Basically, people just don't care because they have so many other things going on. Thanks for the link.
~ Jeannie, Forum Moderator/Diabetes & Fibromyalgia
I know God will not give me anything I can't handle. I just wish that He didn't trust me so much. ~Mother Teresa

"People are like stained glass windows: They sparkle and shine when the sun's out, but when the darkness sets in, their true beauty is revealed only if there is light within."- Elizabeth Kubler-Ross


carolynvb
Veteran Member


Date Joined Oct 2006
Total Posts : 540
   Posted 9/29/2008 11:58 AM (GMT -7)   
There is always hope :)  This has been a nightmare for me for years and it is getting soooooo old.  At the very least when dr's are allowed to practice without the fear of persecution until guidelines have been set in place that would be a good start :)  Under Our Skin the documentary from open eye pics has been a huge help in the lyme community.  I know the pain and anguish that accompanies fibormyalgia and my hope is that eventually changes will come into play.  you know it comes to the point when you are searching for an answer you don't even care what the name of what you have is.  I wished for anything just a diagnosis and some hope of taking the pain away.  I know you can all relate.  Every moment of every day is a different level of crappy.  When people ask I just smile and tell them hanging in there!  I don't have the energy or the time to relay how I feel and in all honesty most don't really care to know!
I was so surprised by how kind your forum is and the help that I received.  I think that there may be some link to it all for some of us...I know for me the trigger was walking pneumonia (which I had never had before) and I just never got better.  I always had swollen glands growing up even when I was not sick they would come and go and be painful and I was not  sick to follow.......I think my genetic disposition plays a huge part.  I think the hardest part is trying to be a good mom.  I have 4 kids and my last was  a total surprise.  I even went through radiation pregnant when I say surprise I mean surprise!!!!!!!!!! he is good, but I don't have the energy or the ability to be the mom I was before.  I love him so much and it is so hard somedays.  I want to take him out and about more but I am in so much pain I just cant.  My oldest is 19!!!!!!! so this is starting again and he is a huge blessing I just want to be well for him especially.....  I want to play soccer and camp and hike.  Now a hike is getting up the stairs. I was great during pregnancy all symptoms went away.  Right after he was born and the hormones changed BANG back again with a vengence.....roll on.  There is hope.  There has to be.  I think the minocycline is helping as well as the lyrica.  After the initall herx reaction I have felt better as the mycoplasma level has decreased.  Does anyone show re-activated epstein Barr as well as mycoplasma? Do you get tested for those things as part of the regular fibromyalgia diagnosis?
 
hugs to you all,
 
C
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