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originally posted by: jtma508
I'm extremely sorry to hear about your struggles. As a somewhat recent chronic Lyme disease survivor I can relate. Based upon my own experiences and the rampant medical ignorance that allowed my disease to run rough-shod over me for over 4yrs I'm outraged by what I hear. I tested negative repeatedly for Lyme and was then told I had some 'idiopathic arthritic condition' and was placed on prednisone (an immune suppressant) for 4yrs. This, of course, allowed the organisms free-reign while my symptoms were moderated. Thinking on Lyme has taken a 180deg turn in even the last few years. I am willing to bet that a very high percentage of people diagnosed with chronic fatigue or fibromyalgia are actually suffering from chronic Lyme --- a disease the IDSA (Infectious Diseases Society of America) until very recently refused to recognize as even existing. Despite an increasing epidemic of Lyme and its co-infections, clinicians are still mostly ignorant about how the disease manifests and the unreliability of tests. My experience has taught me --- despite my medical background --- to NOT trust doctors. If I had not taken control of my own care, done my own research and chosen clinicians that KNEW the disease, I'd still be significantly debilitated and probably well on my way to a heart transplant or worse.
originally posted by: BatheInTheFountain
Chronic Fatigue Syndrome doesn't exist. Like most "syndromes" it is an effect of your Autonomic Nervous System reacting to emotions.
Plain and simple. The "cure" for CFS is actually in your emotions, if all tests have come back negative for anything physical and you have nowhere else to go. What do you do when that "Lyme Disease" test comes back negative. Or that immuno-response test does? What then?
I've known many people with CFS cure themselves.
originally posted by: Nyiah
I've had this blasted syndrome since I was diagnosed as a pre-teen. I've got about 18 years of fighting for a working balance under my belt now, and no balance has yet been found. All the vitamins, all the supplements, all the tweaked dosage levels of them, all the dietary alterations, and all the varied exercise in the world hasn't make a bleeping lick of difference. It all works for the very short-term, and then it's back to square one.
It well could be that the problem is in the engines (mitochondria) rather than the fuel & upkeep (food & exercise) This is one of the most compelling explanations for CFS I've seen yet, even if partially responsible:
Mitochondrial Dysfunction, Post-Exertional Malaise and CFS/MEedit on 12/3/2014 by Nyiah because: (no reason given)
originally posted by: knackers323
Hi Jinni do you have any experience in treating these illnesses?