I think CFS and FIBRO patients should watch this.

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Lymeblue
Regular Member


Date Joined Jun 2007
Total Posts : 24
   Posted 8/29/2007 3:32 PM (GMT -7)   
 
  After helping people diagnosed early with these disorders and later on Lyme, I think you should all read all these testimonies of people initially diagnosed with CFS and FIBRO.
 
  Remember these 2 terms is a name given to a range of symptoms....the cause might be infectious or viral.
 
  Please read.
 
  BTW the last lady I helped was told for the last 12 years she had CFS and Fibro because of Epstein Barr virus exposure....later on I found a study describing people diagnosed with Lyme  who initially tested positive for EBV
 
  Enjoy.....you might have Lyme and not know it...
 

MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 8/30/2007 4:26 PM (GMT -7)   
I think with autoimmune malfunctions the manifestations of the malfunction of autoimmune come with a myriad of possibilities. There is no cure or treatment that helps everyone because we are all different individuals. Unfortunately since autoimmune malfunction is not necessary understood well (as in the doc's do not really have their brain's wrap around it) this falls more in the area of medicine where it is an art form. I think it is important to be an informed consumer of health care and that unless one is incapable of rendering an informed decision to never supplement another's judgment for your own. I think the polite thing to do when someone gives advice (especially if it is solicited) is to thank him or her for their input and that you will consider it. And if that advice does not pertain to your experience of the disease then the consideration would be to disregard the advice.

However while the info is appreciated this is unsolicited advice that makes people who have a confirmed dx, feel like they need to defend themselves. With the area of grey that surrounds autoimmune malfunction it is good advice to get tested for everything (and any good doc does this) it really becomes a question of how competent is the patient’s judgement in their doc’s and that is what hurts peoples feelings..

I understand that you are new and have not seen the rather rude prior posts about people’s dx converting to Lyme, and so this is why we ask that comments like these lyme conversions be kept to the lyme forum in effort to keep the peace. Thanks you for your copperation. Please do not think that you are not welcome to visit the other forums, but we would like to keep the lyme discussions on the lyme forum.
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I will find a way, or make one.-Philip Sidney
Make sure your suffering has meaning...

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